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Prostate cancer (PC)
Just FACTS ....no hype, no promotions, nothing to sell you!
I am not selling nor promoting vitamins or quack cures.
I am not promoting certain doctors or hospitals or books.
I will provide you with a lot of free and I hope valuable information!
© copyright, 2004, 2008, 2012, 2014, 2017, 2018, R. Fleischer
The above QR code, for Smart Phones, is the address (URL) for the HomePage, not for this article!
The primary purpose of the information in this very long article is to educate you, whether you have prostate cancer, or not. This article was specifically written, and is kept up-to-date, to help you make intelligent reasoned decisions about your health. This article is also for your "significant other" to read.
This is a very long article. It contains a considerable amount of information about prostate health & prostate cancer (PC), much of which is rather difficult to find in one place ...or, to find at all. This article was originally written to be a chronicle of my personal experiences together with a lot of solid medical information. Little of my personal experience was 'edited-out' initially. In 2010, and again in 2014, having had 'complaints' about the excessive length of this article, I shortened the parts about my personal experiences ...but the personal experience part is still lengthy and that is unlikely to change. This article is quite long. If you want in-depth information, this article should be of considerable value to you!
<<<<Your gland is called prostate ...not 'prostrate', which means lying down on the ground>>>>
This article avoids go-go ideas & the latest unsubstantiated 'cures or treatments'. I do not have things in this article that I cannot back-up from solid medical sources. There is nothing in the body of this article directly from certain types of "so-called doctors", whether they are really MD's; or, to put this bluntly, quacks; or, that have something to try to sell you; or, are reasonably well known to be 'off-the-wall' ...and thus are not reliable sources. What is here is gathered from a variety of sources such as Johns Hopkins University Medical, Mayo Clinic, National Institutes of Health (Government), and similar. Only in a few ...very few ...instances have I had to comment on such sources to show pecuniary or similar reasons for false conclusions. I am very careful about this. You should also be made aware that most TV news and other 'media news' sources are highly suspect, even when they are doing a news story, rather than an info-mercial.
At the end of this article is a longish list of References & Resources....some are quite important!
Be sure you do not skim this article the first time you read it. On purpose I have not indexed this article like a technical book would normally be done (such as with footnotes, a table of contents at the beginning and a formal index at the rear of the book with citations).
The information here is technical in some places but I have written this article mostly in layman's terms, trying to avoid the worst of medical terminology. I have included some technical terms, because you will be exposed to them at doctor's offices, etc.
If you have been recently diagnosed with Prostate Cancer, you are likely to be quite emotionally involved. Read this article more than once, as you are unlikely to absorb enough with just one reading. Reading the article slowly will be to your advantage. You will become better informed, and then you will be able to intelligently discuss your situation with anyone ...especially your doctors. After doctor's visits, or now and then, re-read this article. You will understand more and more. If you have had Prostate Cancer for some time, have gone through treatments, are considered to be 'advanced' in your disease, etc., you may find this article to be less valuable ...but I will, and have been, adding more to the information here about advanced disease.
If you have not been diagnosed with having PC, are curious, are a woman, etc., this article might well be of interest to you; and potentially can save lives. If you are a man, you might also gain a better idea of the psychological problems a woman may have, dealing with breast cancer ...or, really, man or woman, dealing with any type of potentially serious disease ....or other problem.
I suggest you save the URL (and not this article itself) in your computer ...as I do update it. A URL is the formal internet address of this article. So, if saving the address for this article, you save this: http://bmwmotorcycletech.info/prostatecancer.htm. Set this article as a Favorite or as a Bookmark, which are the same things in computer-speak, if that works better for you, in how you will access it again in the future. I have coded this page so that only a fresh copy should be on your monitor screen each time you access this page, but the process is not perfect; so, be cautious about your computer's cache file ...your computer may save old copies of articles. To be certain of avoiding this problem, click on the address you saved, and when the website appears, then press F5 or click the circular arrow next to the URL line in your computer browser ...or; however you refresh your computer's pages, each time you access this article.
If you are also interested in my technical articles on BMW maintenance (or, other ramblings), then I suggest you use the QR code at the top of this article if you have a Smartphone; or, use/save the following URL, from which you can access all my technical articles and this Prostate Cancer article: http://bmwmotorcycletech.info
My e-mail address is: http://bmwmotorcycletech.info/emailimage.htm. Please feel free to E-mail me with any questions or comments on this article. Information on that page about not contacting me does not apply to questions about prostate cancer.
I am not a doctor (as much as my parents wanted me to be, & even convinced me to attend pre-med in college), but I have in-depth knowledge about PC. I am an engineer, and more than somewhat of the nerdy type. I insist on knowing everything (I have SOME limits!) about whatever I am interested in. I have a very high curiosity level. I also have a high level of skepticism, if not cynicism. I am good at separating facts from hype. As far as PC is concerned, I have studied ...and continue to study ... 'the literature'. I monitor trials, studies, latest techniques, etc. Some are listed and referenced later in this article. I also try to keep in touch with doctors and other institutional researchers at the leading edge of prostate cancer work. You won't find much information in this article about 'go-go' and other promoted work that seems promising but has not been generally accepted as worthwhile, or reasonably proven. I am not going to bother you with, nor promote, false cures, wild claims, etc. In a few instances I may cite studies or types of information that have been reversed, as you may well run into old outdated and wrong information that is still being touted here and there. Keep in mind that the Internet is a vast place, with all sorts of promotions that may not look like promotions. Be very careful who you listen to. Keep in mind that when 'news' stories are on TV about prostate cancer, quite often they are highly truncated stories, often facts are twisted or left out or just plain wrong ...and the purpose of the story is often just to fill in space/time ...and, in the worst cases they are promoting something. Be skeptical of even what I say!
Before I get into the main body of this article; or, later, after reading it, you may want to read the biographical article about me. You can find mention of me all over the Internet, including my background; however, none of it is very complete. I wrote a somewhat funny bio, and it is accessible from my homepage, but here is a direct link: http://bmwmotorcycletech.info/whothehellissnowbum.htm
I have done a lot of research about PC; and, have had my verbose writings vetted by some recognized medical experts, some of who spoke freely. I invite you to investigate what I say in this article. If you find anything not accurately portrayed, please quote your source(s), etc., when you E-mail me the information! I am very proud of the fact that there have been no such reports so far (heck, you could be the first!).
The meat of this article begins here.
Some general practitioners & other medical professionals including radiologists, cancer specialists (oncologists), urologists, etc, either are not up to date; or, much more likely, will not tell you things that you probably should know. Sometimes health insurance companies, etc., pressure doctors to withhold information in various subtle (and not so subtle) ways. Average time spent with your doctor, particularly after the initial consultation, is typically about 12 minutes. This is more than a bit due to Insurance Company or Medicare and other pay rates, so some doctor's tend to not tell you things that might bring about longer conversations. This is not true of all doctors.
If you are embarrassed or squeamish by discussion of, or words like, prostate cancer (well, you got this far didn't you?), penis, ejaculation, orgasm; biopsy, sexual functions, etc. ...then, I suggest you stop here and go back to my BMW Motorcycle Technical Articles; or, go do something else. If you are not embarrassed, but are getting jollies; you are sick, warped, weird; and, I haven't the foggiest idea what to tell you. :-)
I have tried to write this article not only for those with a diagnosis of PC ...but, also for those not so diagnosed. I hope that you and your 'significant others' (never liked that Politically Correct term) who want to be educated about Prostate Cancer will do some thinking; and, that men will get tested regularly, maybe even change your diet and get more exercise. Don't stop here, suddenly, because you think that I am a faddist ...because exercise ...and diet ...does ...perhaps more often than recognized by most ....influence the occurrence of PC and its outcome and progress. This is proven. It is hardly the only influence, of course! PC is very likely due to a combinations of environment (including chemicals and foods), diet, genetics and/or race, and age. The older you are, the more exposure you have had to 'things'. Another reason is that the older we are, the more chances for various mutations in cells in our bodies. Almost every quite old man will have some sort of prostate cancer that might be detectable. This does not ...in itself ...mean you would need treatment. Most people die of heart attacks & just plain old age things, and yet the men may also have prostate cancer, perhaps in a quite minor way. Many men live very long lives with a goodly case of prostate cancer, and never know it, ....or it is not a problem.
All the information presented here is absolutely true as far as I know. I have tried to void over-emphasizing some things, and I have tried to not gloss over other things. All as apropos. I will explain what I think you need to know, and more. I have consulted, on a great deal of the information in this article you are reading, with truly knowledgeable medical doctors, experts in their fields. I have generally avoided those who were involved with my personal care ...so that I will be giving you honest, fair, and probably overly-complete information. At the end of this article are Addendums, References, etc, and information on certain books and other sources of information. Also, a revision date for this article....so you can see when it was last updated. It does not need updating very often; usually a few times a year. Almost nothing is ever needing of updating except newer treatments, newer drugs; and, rather particularly, updated findings.
I have nothing ...zero ....to sell you! .....I am not selling nor promoting vitamins or quack cures or promoting certain doctors or hospitals or books. I will provide you with a lot of free and I hope valuable information!
Prostate cancer, PC, or Cancer of the Prostate, is very common.
A rather high percentage of men will have it sooner or later. The incidence is considerably higher than for women's breast cancer. Most men never find out that they have prostate cancer, nor will they die from it; rather, they will die from other causes such as accidents, heart attacks, etc. In the U.S.A., men have a 50% chance of some sort of cancer in their lifetime. But, only about 1 in 10 men need treatment. Do not get complacent by that seemingly mild figure. I am going to give you plenty of statistics and 'numbers' in this article ...but I will do that from a different standpoint, and with in-depth discussion; all of which will differ from the headlines-type of supposed-information you will tend to get on your TV, magazines, newspapers, etc. Statistics without real information are often worthless, or misleading, and headlines and other things are there to grab your attention, and can be very misleading.
We need to get through the basics here first, then we can deal with, I hope!, what you might be interested in.
Of the cancers that men are likely to face (not the same as what cancer is most prevalent, nor any other interpretation), skin cancer is likely #1. Prostate cancer is probably #2. About a quarter million new cases of prostate cancer are detected every year. About 30,000 men used to die from prostate cancer every year; that is going down due to much better treatments. You can easily see from the quarter million and 30,000 figures, above, that 12% (of the number of those being presently diagnosed) use to die every year...but statistics can be very misleading. Keep in mind that statistics are often "interpreted" for very specific reasons ....perhaps to sell you something or sell you a specific type of treatment. Statistics are also used for headlines and catch-lines value in news stories. For just one example: What is the number/percentage dying of PC that were diagnosed 5 years ago? 10 years ago? 30? Can you see that statistics are easily warped? The government itself warps statistics, on purpose ....most recently, with regard to prostate cancer, regarding age and testing that 'it' recommends. That is because the Government has an interest in reducing immediate costs for testing. Our Government has never been much good at thinking long-term ...at least, not in my lifetime. It is also true that in too many instances prostate cancer was being over-treated!
You do not want to die from PC. It will likely going be bad & painful. The amount of strong narcotics needed to control end-stage pain are eventually large, and you will not have a pleasurable life at that point, nor considerably before. You will also likely be taking drugs to suppress testosterone, and bone pain, which have their own not-so-nice side-effects. You could even have your testicles removed; which is not done all that much anymore ...but is certainly cheaper than some long-term use of some drugs (and, with somewhat less side-effects!). Of course, testicles removal is not reversible. Yes, I am aware that removing testicles is just not talked about anymore. If you have had radiation, or surgery, or both, and your PSA is bad, you have few direct medical choices on what to do. It is easier for a doctor to prescribe Lupron (an anti-testosterone drug), than to order testicles removal surgery. The anti-hormonal drugs can be costly. But, Medicare will likely pay for them as "chemotherapy" and/or surgery. A urologist might talk to you about Lupron and other drugs, but most will refrain from talking about removing your testicles. Why? I am not recommending anything here ....I just want you to think. Most of this article deals with those who are very far from such end-stage or surgery or radiation failures, or rapidly rising PSA readings following a reasonable time after treatment. So, now that I have scared you a bit by mentioning 'removing your balls' ...that is not what this article is about! ...my intention is, yes, at this moment, to scare you ...but only just a little ...to get you to read all of this article! You have now just finished reading a paragraph, quite early-on in this article, mentioning removing your balls, or anti-hormonal treatments. Do you have a funny feeling? A slight sickening in the pit of your stomach? Suppose I had re-written this paragraph so that it was a very catchy introduction sentence, designed to grab your attention, but provide no real information? Would you feel differently? Would you want more information... really??
Prostate cancer is big business, and many doctors have a vested interest in their particular specialty, such as a Surgeon, Urologist, Oncologist versus a Radiologist (or Radiologist-Oncologist). There are even companies who, on TV or the Internet, etc., are trying to sell you their drugs ('ask your doctor': "have you thought of prescribing...putting me on.... this"). Have you noticed the amount of $$$ drug advertising on TV (at least, USA TV)? Every one of these advertisements touts a drug for you to consider and for you to talk to your doctor about. They also list, usually quickly, some of the enormous list of side-effects. Some magazines will tout 'natural' things. I am not, in the slightest, against you using anything that will help you ...but I am a skeptic ...and cynic! ...until something is well-proven.
One must be cautious in what one hears and reads. In my case, I had straight talk from many sources, probably due to my initial knowledge, and my careful selection of these sources. I also had some medical background, which helped me ask the right questions ...and ...I knew who & what were the major medical institutions, such as Mayo and John Hopkins. Do not take my words about vested interests lightly. 'Vested interest' can be financial or experienced specialty ...or both, plus a few other things more subtle ...and one of the not-quite-so-subtle things is 'researchers' hunting for $$$ grants.
Vested-interests include go-go or the latest supposed treatment, such as 'green laser', and, whatever. Just the word 'laser' seems to attract people, when they should not be necessarily attracted. Where many go wrong is being too emotionally involved to think clearly.
The risk of developing prostate cancer increases with age, and that rate of increase is far greater than for any other type of cancer. A while back, it was thought that the risk if younger than 39 is about 1 in 10,000; if between 40 and 59 it is 1 in 103; for 60-79 it is 1 in 8. These figures have been revised recently, and at the end of this article I have a link to an article that is very up-to-date (2017).
Within those above categories, the risk rises to the higher numbers as one gets older in that group age spread. The rate by country also greatly varies. At the low end of risk are countries like China, India, Japan, and Italy. At the top end are Switzerland, Australia, Sweden, Canada, and U.S.A. This figures also have to be taken in regards to what they really mean. While the figures are correct, the actual incidence of PC is much higher, but the PC is hardly measurable by PSA, and never causes problems. There are specific tests, PSA and others and biopsies if needed that will tell you and your doctor, if treatment of any sort is needed, or advisable. For instance, if your PSA is reasonable (I'll get into it in huge depth in this article), but is not rising much (or velocity of any rise is slow), then you might well not want to do anything, but just watch it every 6 months to a year.
As immigrants living in low risk countries move to and live in the top risk countries, their PC rates rise to roughly the norm for the new country. That tends to make one think that environment and foods are large factors. In fact, very serious connections between foods and incidence of PC have been shown over and over. I believe it is likely that a combination of various chemicals in our environment and in/on our food, will eventually be shown to be synergistic and promote cancers, race and genetics is a factor, because statistics prove that.
Of many suspected causal agents, chemical substances called free-radicals (these are always attacking us) are definitely a problem. When younger we have natural protection amounts of anti-free-radical chemicals in our bodies; that is, they neutralize the free-radicals. Pre-cancerous lesions are found in roughly 33% of all the world's men in their 30's. It appears that younger men are protected by an abundance of anti-free-radicals. We have less and less of this 'protection' as we age.
Human beings in the developed world are living much longer. As we live longer and longer, we have more time to develop Prostate Cancer. It seems to be that some types of foodstuffs are helping bring about PC. Some food preservatives are very suspect now; not just the probable effects of having hydrogenated fats in your diet (which also seem to be heavily involved with women's breast cancer). The hydrogenated fats study was funded by our own U.S. Government, was done in Finland, and the report suppressed (I am not kidding!). I saw this research summary over decades ago .... long before I was diagnosed, or even had much interest in researching PC. I saw the study because I was volunteering to care for HIV and Cancer patients, and had access to the Health Department's computers, with their permission.
Interestingly (?), being overweight/obese does not seem to make much difference on getting prostate cancer.
Right here, right now ....a few paragraphs of importance!
The DRE (Digital Rectal Examination ...the gloved finger of the doctor up your butt ...) can not detect more than about 40% (at best) of prostate cancers. Hence we have the PSA test which is in such widespread use. The PSA test is not a 100% reliable test, but, it is very helpful. The trend (or, velocity) of your PSA readings is usually vastly more important than the absolute value; but, not always. Please keep this in mind: "trend or velocity and absolute value". Someone could have a low PSA, and a doctor might find cancer with his finger (feeling for nodules) ....or he might not! But, that DRE, and the PSA test, together, are, at present, your 'keys' to finding a problem early, and thus being able to deal with any problem before it becomes a big problem. We simply do not have any decently reliable reasonable cost tests besides PSA, Free PSA, and DRE. There are some interesting tests in research, but it may be some time before they are fully proven and fully accepted. I will discuss these when appropriate.
Because it is possible for PSA to be rather low, yet prostate cancer has started-up, the use of the DRE, the digital rectal examination, is still very important. PSA has not replaced it. They both must be used. In general, guys under age 40 don't have hardly any need for a PSA test, but some doctor's will recommend one, particularly if the family history shows multiple incidences of prostate cancer. Some doctor's still don't do DRE's at annual physicals, etc. Why not!?
The key to preventing a fair amount of PC is probably a life spent with moderate exercise, proper diet, low exposure to pesticides and other environmental hazards....and not having a familial history of PC, nor being African American. It is entirely possible that 'exposure' may include combinations of food additives, and it is also quite possible that some generally safe food additive or other substance may be not so safe if combined with another or two or three substances. This sort of thing is exceedingly difficult to research, and that is why so little is being done, except for broadly based recommendations.
The key to a cure (if you have serious PC, and if a cure is possible) is to remove or destroy the cancer before it breaks out of the prostate gland. It may be curable if confined to the seminal vesicles, but if it gets into the lymph nodes, it is not curable, it will always spread, likely already has, and PC cells have a nice affinity for bones, although it can spread to almost anyplace. One might still have a long life, or a normal lifespan, depending on what that means. Lifespan will depend on your age, already expected lifespan, and on the aggressiveness of the cancer cells. Cell aggressiveness is part of the so-called Gleason Score consideration ....which I will get to in-depth later.
A 'cure' may not be necessary for you. That includes trying for a cure. Age, life expectancy and what is found in various tests, are all required to make an informed decision. In many instances, in fact possibly a goodly percentage ...some think upwards of 40% of PC cases detected....there is not enough life expectancy from normal aging to warrant serious intervention. That means, that for a considerable number of cases there is really no good reason for surgery or radiation ....with some caveats. If you had 10 or 15 years left to live, per life expectancy tables, do you really want to go through serious surgery (or very serious radiation .....not to mention hormonal treatment, etc)? All these things will affect your quality of life. ......or, would you rather follow a regimen that is well-proven to work well in the vast majority of PC cases and may well give you a normal life-span anyway. You need to make educated guesses & estimates for yourself. The problem for you is that there are very few absolutes when dealing with PC. That means that you need to be well-informed.
There are many instances in which a man who has other serious medical problems; or, is of quite advanced age, who has prostate cancer, who may well decide, after considering everything, that he does not want any tests nor any treatment at all. Each man must decide for himself, preferably with the help and advice of his doctor.
There was and still in common use, a system of PC management called 'watchful waiting'. There is also a type of PC management called "active watchful waiting" or "active surveillance". These are NOT the same thing. You must decide, perhaps with your Urologist's help, what method is for you. Frankly, if I had been older, perhaps 70+, I might not have selected surgical treatment ...assuming certain criteria was met.
Active Watchful Waiting management has several other types of names. It can be called Supervised Prostate Cancer Management, Expectant Management, Active Surveillance, Active Oversight, or Active Monitoring, etc. All of these mean much of the same thing nowadays ...specialized watching and care by a medical professional, with the idea of avoiding surgery, avoiding radiation, avoiding drugs, if or as long as possible. This 'option' makes a tremendous amount of sense for a lot of men. Did you know that about 1% of men who go through serious prostate surgery are found to not have PC? Did you know that 25% of men with PC diagnoses turn out to have a cancer that is so tiny, so insignificant, that real experts (Sloan Kettering, or Johns Hopkins sort of 'experts') question the reason for the surgery? In fact, the risk of the surgery in these cases likely is much worse than any possible questionable gain. Surgery and radiation procedures that are probably unwarranted are also being done on men who are fairly young. Near the end of this very long article I provide a link to an article that explains these types of management in a simple, yet detailed, manner.
Certain types of statistics are part of the reasons for less active PSA testing and less aggressive biopsies as 'promoted' by governments and associated health authorities over the last few years (they don't mention, much, that it greatly reduces the costs to such governments that provide health care). That's the cynic in me coming out here! But, for those whose normal life expectancy is not great, there certainly are good reasons to not go through biopsies and aggressive treatments. There is now an on-line group, allied with major research centers, for those who have low-grade prostate cancer; and for whom watchful waiting or other minimal testing or treatment is proper.
Many physicians today don't even recommend PSA tests for men who have a statistical life expectancy of 10 years or less (with some using 15 years). The reason is that most (but not all!) prostate cancers are very slow growing, and these men are very likely to die of old age, or something other than prostate cancer, long before they would die from PC. The recommendations against PSA testing at advanced age is actually quite reasonable. However, how long will you live? Do people in your family background live to quite advanced old age? I wish to emphasize that if you already have had a PC diagnosis, with or without surgery or radiation, etc., treatment, you probably really do want to continue with PSA tests, no matter the age ...unless you are in the extremely old category.
It is important to understand that almost all medical-speak is in terms of averages. Where do you fit in with 'average' ...?? Have you ever (me, the cynic and curmudgeon here!) thought about the fact that 50% of the people you meet on the street are below average (on such as intelligence). OK, a bit of a smile here!
***It is important to know that if your PSA is low, let us say under the value of 4.0 (previously 4.0 was the cutoff value for further investigation), statistics tell us that you have a 15% chance of having prostate cancer. However, only about 15% of Those 15% of men will have a high grade (fast growing) cancer. Thus, if one uses 15% of 15%, that means that if you have a PSA of 4 or less, you have a 2.25% chance of having a high-grade fast-growing cancer. Yes, I know that there are other ways of looking at these simple statistics, but few realize what the Media does with statistics. The Government, and some in the health care system, might say that PSA testing, showing 4.0 or less, is not worth doing biopsies, ...after all, if you have 4.0 PSA, your chances are only a bit over 2% of having a fast-growing nasty cancer. But, are you willing to take that chance? Suppose your PSA is 4.0 ....do you want to have a biopsy series? Suppose the biopsies do reveal cancer. What is your age and life expectancy? What is the involvement, what is the grade, or virulence, of your cancer? Much to think about.
***In the last several years some reports have come out at government levels, that are interpreted to argue against psa testing. Be sure to think carefully, and read fully, those various reports; before you make a decision about your PSA testing.
What if ...you are in your mid-sixties (typical for a man finding out he has PC), have no feelable nodules by DRE, your PSA is under 10, and biopsies show a Gleason sum of 6 or less ...and that is in only one or two of the biopsy cores? Well, you may then be a very good candidate for deferred treatment ...in fact, you may be just as much a candidate for active management, as is a man in his seventies and eighties who has an aggressive tumor! But, this is a decision to be made by you, with the help (one hopes) of your physician.
A number of studies ...fairly substantial and well done studies ...have shown that deferred treatment is probably the best way to go, under some circumstances. This has been shown to be true in the USA, Canada, and other Countries.
You might well decide on no radiation, no surgery ...and you may well find that you have saved yourself a lot of the problems with interventional 'treatments'. Don't stop reading here ...I am not some nut case that is against surgery or against radiation! After all, I decided on surgery for myself, and I was well-informed before making that decision!
In order for this type of Active Watchful Waiting with delayed intervention (if needed at all) and management to work properly, for best results, you must, according to some reputatable sources, have a diagnosis that fits the below information, and you should think about following what I have put below. Remember, that the risks and side-effects of surgery and/or radiation and/or hormonal, etc., treatments, may well far surpass the risks or problems, if any, posed by the cancer. What I am listing here has worked very well for the large majority of patients with PC. That does not mean I am 'promoting' it ...just that I want you to be informed about all types of treatment. This information was not developed by me, but by a very major cancer research group.
Unless your PC situation is such that it is an immediate threat to your life, which would be very highly unusual, then you might want to think carefully about what is just below ...after which I get back to the main article information.
When to think about Active Watchful Management of PC:
What follows is an older and rather stringent list. Please see the Prostate Foundation website for latest recommendations!
See also the notes at the end of this list!
a. Your biopsies shows a Gleason Score 7 or under. If curious about some of these things, see the Johns Hopkins "Prostate Disorders", 2008".
b. Your PSA is under 10.
c. Your FREE PSA is more than 10%.
d. If you have been tested regularly for PSA, & the velocity is NOT greater than 0.75 ng/ml per YEAR. NOTE! ...many doctors will use about 0.35 ng/ml rise per YEAR as the point of cutoff for even doing biopsies. The original advice was that biopsies are performed if a PSA velocity exceeds 0.75 ng/ml per year. Lots more on this later in this article.
e. You have Clinical stage T1 or T2; AND, the cancer has not broken through the prostate (that last item is pretty iffy to determine, actually).
f. You are older than 65.
g. You get tested for PSA once every year (previously 3 or 4 months).
h. You get transrectal ultrasound of the prostate every 6 to 12 months.
i. You repeat the biopsy tests in 12 months.
j. Your DRE is not showing any nodules by feel, and you get this done once a year.
These are stringent requirements. Item (e) and (h) are often not part of the above list. Some doctors would not use (f).
***The above information list is slightly modified now, and I provide a link to an article, at the bottom of this long article.
Some research has cast doubts on previously accepted theories that for most men over the age of 70 or so, that 'watchful waiting' is better than treatment. It now appears that some type of treatment, probably hormonal at that age, will increase lifespan. Whether or not such treatment improves Quality of Life, is another story. UNfortunately, the reports do not generally differentiate between Watchful Waiting, and ACTIVE Watchful Waiting. I need to delve into this in more depth, and for the latest information.
Before I get into the rest of the article, since I already have introduced some technical terms, here are some more you may need to know about, and you probably will come back here later, to review these, after biopsies, or other testing:
Gleason Scores (or Sums), are a way of identifying the stage of prostate cancer as seen from examining the tissues from biopsies of a prostate gland. Doctor's use those Scores, and other things, to describe Clinical Stage of disease.
Stage T1-C: PC has been found via needle biopsy, and is too small to be seen on scans, or be felt.
T2 with or without letters means that the tumor is only found inside the prostate gland.
Stage T2-A: Doctor can feel the tumor via his finger in your rectum ...but there is less than 1/2 of one lobe having such.
Stage T2-B: As above but more than 1/2 of one lobe.
Stage T2-C: As above, but feelable in both lobes, cancer is still inside the prostate gland.
If your cancer is in one of the above T2 Stages, & your Gleason Score is 7 or below, your cancer is probably curable.
Stage T3: The cancer has broken through the prostate gland, which is sometimes called 'locally advanced'.
Stage T4: The cancer has spread to other organs, and is sometimes called 'locally advanced' or 'advanced'.
N: The letter N refers to lymph nodes staging.
N0 means that no cancer is found in the lymph nodes looked at.
N1 means that there was one positive node found, and it was less than 2 cm across in size.
N2 means that there was over 1 positive node found; or, that one at least was 2 to 5 cm across in size.
N3 means that any positive node found was over 5 cm across.
M: The letter M refers to metastasis ...that is, spreading.
M0 means that the cancer has not spread outside the pelvis.
M1 means that the cancer has spread outside the pelvis.
PC in Stages T3, T4, and M, were probably not treatable with surgery or radiation; or, were not a few years ago; now some treatment is available. Hormones may be used to prolong life and reduce pain. Here is an article to slowly and carefully read, because it presents the information differently, and is present thinking: https://www.cancer.org/cancer/prostate-cancer/treating/by-stage.html
There are links in that article that take you to other articles that explain certain things. Do read them.
Note that many new potential therapies are in either laboratories or undergoing testing, that includes gene therapy and many others. I invite you investigate these yourself, but do ...strongly ....keep in mind that you should not trust anything remotely or vaguely that might be a promotion, in any way. Be very skeptical. Use only the best and most reliable major sources, such as Johns Hopkins, etc.
Keep in mind that if you have PC, you may need to make a serious decision ...what to do, or not to do. You should not hide from this decision that will ...or could ...have such a major effect on your life. You are the one, not your doctors, friends, nor me! .... that must be informed and make this decision. Your doctors may make suggestions for treatment, but you need to be informed so as to ask your doctor the correct questions, etc., and then you make the decisions! It is your life ...not your doctor's life. It is also not your spouse's life, nor your children's life, nor your 'friends' life. I know this is difficult; but, do not be overly-hasty to do anything. PC grows very slowly, even the more aggressive types grow somewhat slowly. It is not a medical emergency.
Dr. Peter Scardino of Sloan Kettering points out that "Because localized prostate cancer takes so long to progress, 90% of all men diagnosed with the disease survive 10 years regardless of what they do".
This article does not go deeply into treatment for advanced prostate cancer. Advanced here means that radical surgery or radiation methods are unlikely to be helpful. There is some mention about some treatments for advanced cases. Even for early stages of prostate cancer, sometimes age and physical condition can make radical prostatectomy or radiation treatment, drugs, etc., inadvisable. Individual cases vary. Always do a lot of investigating, do not believe the first story or diagnosis or prognosis or type of treatment recommended. In some situations, no treatment is the best treatment, and in some, surgery or radiation which might include radioactive seeds, are things to think about, ...as is hormonal treatment.I am repeating this here, and will again, later on...
Prostate cancer begins, it is believed, by one rogue cell, out of many billions of normal cells. That rogue cell divides, and then the two divide, then the 4 divide...this goes on and on. The first rogue cell is distorted more or less, not normal looking, and may be lightly distorted....or horrendously misshapen. Eventually, enough cells are produced that are distorted, for a pathologist to see them in a big forest of good cells. The distorted part that pathologists particularly concentrate their look at, under their microscopes, is generally the distorted nucleus. The larger the percentage of those misshapen cells and nuclei in an inspected area, the worse the situation. These are the most aggressive in multiplying.
Bad cells do not get born, develop, and naturally die off in the same way normal cells do, and thus bad cells keep dividing and multiplying. This is a very complicating factor, especially in treating advanced cancer.
The absolute cause of PC is not truly known for sure, but all research to date shows it "can" be genetic, but likely only a percentage is caused by genetics. Diet and exposure to chemicals, etc., are likely far more important. Things in ones diet that seem to be implicated in cancers in general, and in PC, are: nitrited/nitrated (cured) meats, such as lunch meets & cured bacon; meats grilled over a flame where dripping fats can burn; not enough tomatoes; not enough of some other antioxidant food items. It is public conjecture, internet scare tactics, etc., to lay blame heavily on such as heating foods in the wrong plastic containers (implicated in other cancers). Possible though.
Prior to 2007, I had found mixed information from studies on cruciferous vegetables with regards to prostate cancer. But, by late 2007, enough studies had been completed to allow me to say that I had found fairly conclusive information on the helpfulness of cruciferous vegetables (Kale, Broccoli, Brussels Sprouts, Mustard Greens, Turnip Greens, Cauliflower, Cabbage...). The results of the studies seemed to indicate that these have some goodly preventative value; and, in particular, seem to have a rather substantially beneficial effect on the virulence of any PC that develops. As I update this article in 2017, ten years later, the link to foods is UNassailable. Anti-oxidants are also helpful in reducing risk. There are some other foodstuffs that seem possibly beneficial in prevention, and maybe even if one already has PC. A few minerals in truly insufficient amounts, such as zinc and selenium, were originally thought to be a problem. That has now been questioned. Very detailed studies on zinc and selenium have been done, results were not supposed to be available until 2012, but the blind type and very detailed studies were halted in 2008, when it was found that doses of Vitamin E, and doses of selenium of 200 mcg were not only not helpful, but were harmful! It is entirely possible, that those living in areas with extremely low selenium in foods and water will need a small supplement, but this is entirely unproven.
The helpful lycopenes in tomatoes (which, in some early studies, seemed far more active after cooking than raw tomatoes, but other studies had opposite results) are now known to be absorbed nicely if eaten with a bit of olive oil. Some research has showed that the beneficial effects of tomatoes is "only" if eaten with vegetable oils; in particular, olive oil. It appeared from later research that the value of tomatoes had more to do with whether or not they are eaten with such oils, and less to do with whether cooked or not. This is because prior studies involved mostly those who used cooked spaghetti-type of tomato sauces ...(this is, actually, a simplification here). It is now believed that fresh tomatoes, cooked, and then eaten in sauces or dishes that include olive oil, are more protective than in other forms. I think the confusion is partly because of the way our digestive systems process oils, and how certain things dissolve, or bind, to SOME types of oils. The cooked versus uncooked is still a partial unknown. Best to eat both. With small amounts of vegetable oils. The lycopenes in tomatoes do not appear to prevent you from getting PC. This is tricky, because you could have a very tiny tumor, and it might not even raise your PSA, but the tomatoes may well help. It is pretty well proven, from studies reported on as early as in late Summer of 2007, that lycopenes (tomatoes are the big source) really do help greatly in preventing prostate cancer from progressing. Ten years later it is well-proven. What does all this mean? Well, you'd better have plenty of tomatoes in your diet, detected PC, or not. It is not only tomatoes that contain lycopene and are helpful with prostate cancer. Other sources are pink grapefruit, cabbage, and beets. In every instance I know of, eating with vegetable oils is much more effective. There are proven benefits from other foods regarding cancer ...but this is a prostate cancer article, not a general cancers article.
Avoid hydrogenated oils and fats! I could write a lot about them. Avoid them. The worst is called trans-fats. This is well-proven! Even if you already have PC, continue to avoid these as best you can! Try to avoid them no matter if you have prostate cancer or not.
Helpful foodstuffs include green tea and coffee!
In most media the public sees or reads, one sees: "If caught early enough, PC is typically 100% curable".
Think about that. What does it really mean? What the heck is 'typically'; What is 'curable'? What is 'early enough'? Please read this section slowly and carefully. You may find that the information is interesting for many areas of life!
'Curable' does not mean you are left as you were before any treatment or symptoms!!! They do not put that in their article headlines! ...even longer articles do not hardly discuss that at all! Cured of cancer, as medical doctors use that word, simply means cancer-free for 10 years (10, not 5, is the officially accepted time for PC). Are you curious about why doctors talk of 10 years and not the otherwise very common 5 years for other cancers? Yeah, me too, and I think we'd both have the same conclusions!
'Cured' means you are likely to have a more normal life-span; not die from prostate cancer and its effects. 'Cured' may also mean that your PSA tests show testing machine lower limits, or nearly so, for at least 10 years after your treatment is completed or stops. What if your PSA is, for example, between 0.3 and 1.0 (what about 2? 3?), lets say after 10 years, or say 15 years, after a prostatectomy. Just what does that mean? Does it mean most doctors will say you are still cured? Some might, some might not. After all, some would say the PSA should always be near zero after you heal from a prostatectomy. Does 1.0 after many years, and not rising, or rising only extremely slowly, mean you have PC again? What if it is 2.0, or 3.5? There are no ...or fully accepted ...explanations for some things.
Sometimes PSA will spike temporarily after surgery; same for radiation and hormonal treatment. The 10 year period begins after the spiking settles down. That is pretty much accepted. Ever read anything explaining why the spiking? Think! I haven't read anything definitive myself, so I won't comment further at this point.
Prostate cancer surgery or radiation may well leave hidden a small number of cancerous cells in the body (much more with radiation, usually), sometimes these may grow and eventually show up as an increased PSA reading, even after some years of low machine-limits testing. I think that 3 years or so is probably a reasonably good time to consider oneself as 'cured'....in the sense of making longer-term plans and goals, etc. ...providing your PSA remains "reasonably low". You could probably be more aggressive and use 2 years, and be fairly accurate. Does this mean you put your life on hold for 2 or more years after treatment ...no, I do not mean that!
During surgery for prostate removal pathology may look very good, and there may be no indication of any cancer cells escaping the prostate gland at all; ...yet, years later, PSA starts to mysteriously rise, usually very slowly. Yes, this happened to me. In 2014 I had re-staging and some $$$ testing, as to why my PSA has been rising, slowly, sometimes up/down, since my 9th year after surgery ...it went from around 0.1 at 5 years after surgery, to about 0.5 at 9 years, and 1.5 at 12 years. In Sept. 2016 it was ~3.3. December 2016 it was ~ 4.6. March 2017 it was 5.35, and in June 2017 it went down very slightly to 5.06. My urologist and I are watching my PSA closely. Probably will not do any sort of treatment unless it rises over 10.0.
Men past age 50, and some past age 40, are recommended nowadays to have at least what is called a DRE, Digital Rectal Examination, at every yearly regular medical checkup. The physician uses a gloved finger, inserted into the anus, and feels for lumps or hard nodules, etc....through the wall of the rectum. Some men find this embarrassing. Get over it! Be sure to ask for it, if it is not offered. Unfortunately, the physician can not feel much of the prostate (remember, that 40% PC detection rate is best case) so this is not a 100% check. Each year you are checked, increases the chances of finding a problem should you have one developing. Finding a problem does not necessarily mean you need treatment or further testing. My recommendation is that you have a DRE done yearly from age 40; (earlier if you have a family history of PC; or, are African-American). For those two groups I recommend PSA tests every year.
The other common test, called the PSA (Prostate Specific Antigen) is usually recommended yearly at age 40+ for blacks (African Americans), 50+ for whites (incidence of PC is earlier for blacks, probably genetic, but this is not known for sure). I believe even earlier is better for both groups. Even if you have to pay for the PSA test yourself, it is cheap insurance. Note that my advice is contrary to what some doctors and government agencies or groups may advocate ...particularly if your age is within 10 years of your life expectancy.
You should ask for a PSA test ...& record/write down the readings yourself, & keep the written record for the rest of your life ...adding to that list after every PSA test. If you can, have the PSA test done by the same lab every time, & do not have ejaculatory sex within 2 days prior to the test ...it can skew the results of the test. Some relatively well regarded doctors (not hardly all!) at even such as John Hopkins, say that ejaculatory sex or a DRE, within a day or two does not affect PSA readings. My advice is to disregard what they are saying; and do what I said: no sex for 2 days prior. Bladder or prostate infections can also skew results of the PSA test. Infections should be fully cured first; then wait awhile longer, before the PSA test. My advice is also to not have a DRE (finger exam) done by your doctor within a few days prior to the PSA test. That DRE can affect PSA by as much as 10%. I am not sure just how much ejaculatory sex can affect PSA, but I think it is considerably more than 10%. That can skew your PSA velocity calculations! I cannot overemphasize the need to get both of these tests regularly and to keep your own records. You want to keep track of your PSA ...don't depend on your doctor's office.
Situations where I might agree with you about not taking DRE and PSA tests:
You are dying of some sort of disease you already know about, or are within 5 to 8 years of your life expectancy, and you take into consideration how long your parents and siblings lived, if they died of natural causes of old age, etc. If you have considered these things, and don't wish to have your DRE and PSA tests done, then I have no problem with your decision.
If you don't get PSA or other tests done when you should have ...and, you get advanced prostate cancer, you can then learn all about nasty radiation and anti-hormones ...because PC may be well-advanced when it is found from advanced cancer symptoms. It will be too late for surgery; and possibly too late for radiation or even for radiation drugs. Drugs will be possibly be used to kill bone pain ...which is could be substantial. You also will lose your libido likely well before due to the anti-hormonal drugs you will surely be prescribed, and they are quite expensive. The side-effects from these things will be decidedly unpleasant, to say the least.
Some insurance companies won't pay for a PSA at too young an age, or just won't pay period. Find some place having a 'health faire' and pay the lower fee, and get your baseline PSA. Afterwards, get a PSA every year. Have a yearly physical exam and a DRE. Keep your own records of the dates and results from your PSA tests ...for the rest of your life!
The prostate gland produces a substance called Prostate Specific Antigen and releases it into the blood stream, thus "PSA" is measured with a blood test. This substance is natural, and the reason it is in the prostate in the first place is for its effect on semen, so that sperm can 'swim' and otherwise function better ...part of the 'PSA' acts as sort of a thinner on the semen. This is layman-speak.
PSA values are measured in Ng/mL, which means nanograms per milliliter. You can forget it ...as your readings will be just numbers like I show below, so I will just drop the Ng/ml ending, which is assumed by everyone anyway.
The American Prostate Society says that "The old rule of 'no worry' if the PSA is under 4.0" ...is seriously out of date ...and obsolete. This was confirmed in late 2003 and early 2004, by several very carefully done evaluations of large groups. Also, recommendations on just when to get PSA tests done have changed. This hardly new information is not universally used, unfortunately, which means that the myth of no worries if the PSA is under 4.0, can be a serious mistake.The values below are for men who still have their prostates, & have not had radiation to the prostate:
If PSA is:
Then your next PSA test might be recommended in:
|2.0-4.0||1 year (I say before that year is out)|
There are plenty of worthy books available on the subject of PC. There is an older and rather thick paperback authored by Patrick Walsh (The Prostate ...a guide ...). That book or one of Walsh's others, have been updated. Another older but worthy book is "About Prostate Cancer" by Ellsworth, Heaney, and Gill. That one is published by Jones & Bartlett; who have a website, www.jbpub.com. If you were to purchase some literature, I'd recommend both of them; and see if there are later versions. You might also be able to borrow some books from your regular doctor or a Urologist.
It is common for men to get bladder or prostate infections, which affects a PSA measurement. Common bacterial infections in this area can skew PSA tests. If you have such an infection, your doctor may prescribe some sort of antibiotic, for at least 10 days. For some men, these are chronic infections, and often the cause is that they are having sex with their partners, and the partners are re-infecting them or each other. Many men suffer prostatitis, for years. For those with chronic prostatitis infections, ....10 days of an antibiotic is not long enough for a cure. At least a month on antibiotics, of a type that is known active against their particular bug, is needed. That a month+ of antibiotics is needed is commonly not known by some doctors in the treatment of chronic prostatitis, bladder infections, etc. It is especially difficult for antibiotics to work on prostate infections and in some instances months of antibiotic treatment is needed.
Some medicines decrease PSA considerably, which masks true PSA test results. One example is Proscar (Finasteride). Another PSA test, which measures PSA (that is not 'bound to proteins'), the "Free PSA" test, is not generally affected by that drug. Some medicines decrease testosterone, which can mask true effective PSA test results. Yes, I will explain more of such things in this long article.
Conversely, if you are taking testosterone, that can increase PSA ...I suggest you get tested very regularly if taking testosterone drugs. Testosterone makes a percentage of prostate cancer cells grow; it acts almost like fertilizer for prostate cancer in its effects. Taking testosterone while having higher than normal PSA (in particular) for your situation, is like playing with fire, and needs to be carefully considered, and monitored if done.
If you had radiation treatments; and, after healing your PSA started rising again, your Urologist might have you take some sort of testosterone lowering drug, such as Lupron. Your PSA will lower, perhaps a lot. But, it may not stay quite low forever. The drug affects only a % of prostate cancer cells. Just when to start taking one of these anti-hormonal drugs, is between you and your Urologist. Be sure you understand all the consequences thoroughly.
It is possible for PSA tests to remain low, and yet cancer is growing. That is almost never said anyplace. If the cancer is small in size or involvement, and/or the cells are not overly aggressive (not overly malformed), your PSA may well be a "reasonable" value. The problem is, what is 'reasonable'?
Prostate cancer is almost always said to be 'very slow growing' ...and; that "many, if not most men, will have it eventually, and die from something else". That is all true, but the literature almost never speaks about faster growing prostate cancers. These books, etc., are generally not clear that the only way to truly determine the full extent of prostate cancer is surgery (biopsies are reasonably good, just not as good as a surgeon handing the pathologist the entire prostate to cut apart, as well as lymph nodes removed earlier in the surgery). A fair percentage of prostate cancers are faster growing, as opposed to slower growing.
Figures from the Am. Prostate Society for normal PSA for men having a prostate gland:
|Age||African Am. PSA||Cauc/Asian PSA|
Look at that table just above ...then read this:
25% of PC that is found, is found in men with PSA below 4.0. I previously told you that 15% of 15% of the cancers found with PSA equal to or below 4.0, were fast growing. That is 2.25%.
The gland, the prostate, which has several functions, including making the majority of ejaculate and carrying of sperm, tends to slowly grow over one's lifetime. The larger the gland, the more PSA released into the bloodstream (as a general rule). In a fair number of men, as they age, they find they are having urinary problems.....having to urinate more often, less capacity, having to get up at night to urinate. Those are the usual signs of an enlarged prostate. That condition, Benign Prostatic Enlargement, BPE, is not...in itself ...a sign of cancer! It is actually a fairly normal situation for older men. If the situation continues too long and it becomes more and more difficult to empty the bladder, treatment for that is a good idea, before bladder walls, kidneys, etc., are affected. Some have BPE bad enough to warrant modest surgery for opening the urethra. That or other surgery sometimes needs to be repeated as time goes on and the prostate continues to enlarge (another point not mentioned much about that surgery). The surgery is usually done these days through the penis opening.
You may be quite pleased to find out that there are benefits to having reasonably regular orgasms (ejaculation). Sexual relations are good for any man's health, providing their heart condition, etc. is OK for such. Another reason to have sex is that if you are being treated for prostatitis, the ejaculations are helpful in allowing the antibiotics you are taking to work better.
The prostate is also a powerful muscle, that besides making fluid and collecting sperm, at orgasm forces its contents into the urethra and out the penis tip. The contraction also forces more PSA into the bloodstream. The contraction is part of the pleasurable feeling of an orgasm. The two sets of nerves that control the erecting of the penis run along the surface of the prostate. Dr. Walsh, book cited above, was part of the team that developed the 'nerve-sparing' surgery. It is not always practical to save the nerves during surgery, depending on the extent of the cancer. Radiation is not nice to the nerves either. Those having radiation treatments for PC may find their nerves working fine for a long time ...then they fail. The reverse is often true for nerves spared by surgery ...they don't work for awhile, then maybe they do, after a period of time, sometimes considerable. It is very clear from many years of clinical experience, that even when nerve-sparing surgery is done, that the nerves may take up to 2 years to begin to work properly again. Thus, if a man has his prostate removed, and the nerves are spared, there is a good chance of the nerves working again ...but, you must be patient. Many men find that 18 months is needed, some a bit longer. For whatever reason, as surgical techniques have improved, the time for recovery has improved.
It is also fairly common, after surgery, for a man's erect penis to actually be a bit shorter. I will bet you never see that written anyplace besides medical journals, and even then, rarely seen. Many men think that their penises are too short, and that women prefer long penises. This is all usually hogwash, it is just part of the male dominance over females thing (gay men sometimes tend to appreciate large penises, however)....so, any shortening of a man's penis is a side-effect of surgery. I never found any definitive information studies on the exact amount of shortening, as measured when erect. It is likely between zero and 1-1/2", with 1/2"-3/4" being relatively common. I did find this in a medical journal. Sorry for the tiny print, but it was copied as an image from a respected Journal, and this is information that is very difficult to find!
There is a gray area for PSA of 4-10. Those in that area should very probably have an additional test called 'Free PSA', and maybe a prostate density (size) test (totally not painful). Larger prostate glands produce more PSA, skewing readings higher. My belief is that if one's PSA has risen at a rate (velocity) that seems unusual given previous history, & remains elevated after a course of antibiotics (and no sexual relations nor digital exam within 48 hours minimum, before any PSA test) ...well ....if I was a medical doctor ... I would likely advise you to go see a Urologist, or at least ask your primary care physician for the 'Free PSA' test. You'd want to do this before any possible cancer (it may well not be cancer!) has gotten out of control. If the Free PSA test is over 25%, you probably have no further worries. If regular PSA is 10+, usually the Free PSA test is not needed ....as cancer is assumed.
Are you getting the idea that getting your first PSA is a good idea, so you can have that baseline value, and have yearly PSA tests and that you should watch trends?
Even if the DRE finger test reveals nothing to your doctor, it is my belief that you should get the PSA test every year, and personally keep track of the numbers. It works out better for most folks to have the PSA blood test done right along with the regular yearly physical exam DRE, blood, and urine tests. I recommend that you get the PSA test itself about a week before you see the doctor for your yearly exam, as said exam at the doctors office should include the digital rectal exam, which would affect PSA if that rectal exam was done within a couple days or so before the PSA blood test. Do not have ejaculatory or near ejaculatory sex within 48 hours prior to the PSA test. Other things can raise the PSA value, so I advise you to avoid getting your PSA test within 48 hours of bicycling, colonoscopy, ...and much longer for such as bladder infections or prostate infections being treated.
How much of a rise per year is OK? ...hard to say exactly, but maybe 0.7 or 0.75 is the limit, and anything at or above 0.5 per year is questionable. That rise per year is often spoken of as either rate, or, velocity. There is more information on the rate of increase in this article ....particularly note the section on managed waiting. The rate (velocity) should not be over 0.75 ng/ml per year....for those already diagnosed. In the last few years, a value of 0.35 rise per year has been bandied about, the idea being that if your rise is below that amount, you do not need biopsies, because your chance of having prostate cancer is very small. That is true. You must make the decision, in cooperation with your doctor.
If the PSA test is higher than normal, you might have prostatitis, so, in consultation, you could consider asking the doctor for 10 days of a good antibiotic, then after you use up all 10 days worth, wait 5 days or so (and don't do anything to get re-infected), then get retested again. By the way, and this is little known, even by some doctor's: if you suffer from prostatitis regularly, then a 10 day course of antibiotics is not nearly long enough ...get at least a months worth, otherwise, chronic prostatitis may return. Cipro is usually used, but some bugs need Keflex, or something else. Remember no sex nor DRE within 48 hours prior to the PSA test, and be off the antibiotic for 5 days. No sex here means both no partner and no orgasms, no insertion of penis into vagina (or anyplace else....). No hand jobs! No bicycling, no recent colonoscopy, etc.
If your PSA shows a rising trend that is questionable over a period of time and/or higher than expected for your age, you probably should see a Urologist and get further tests done. Waiting can make things more serious, the treatment more involved. Do I have to keep mentioning this sort of thing? Even if cancer is suspected, and you have to have the biopsies ...what, really ...is a very few minutes (3-10) of being uncomfortable ...compared to months of horrible pain and other nasty side effects of 'treatment'? Do keep mind that I am not promoting biopsies ...as mentioned earlier in this article there are plenty of situations in which even biopsies may be unwarranted ...and, see below for recommendations by the APS.
So, you are having biopsies done?:
What is usually spoken of in most "learned author's books", although maybe not so succinctly, is that combinations of the value of PSA in the normal regular PSA test; plus the result of the test called 'FREE PSA'; plus the results of DRE; possibly the results of a nuclear bone scan; plus record of PSA velocity; and; finally, probably biopsies of the prostate, are all used to obtain an over-all idea of your status. A pathologist looking at the biopsy tissue samples will grade the samples and then assign a 'score' ...usually called a Gleason Score. The results of all these various tests gives a fairly good idea, not foolproof ...of one's cancer status. It is entirely possible to have a modest PSA, and have no detectable cancer in biopsies, hence several other types of tests to rule things one way or the other. The biopsy samples are usually taken with a needle, via the rectum, more on this later.
Biopsies can miss cancer. In order to try to prevent missing something, usually at least 6 samples are taken. The latest information from The American Prostate Society is that at least 10 or 12 samples are far better at detecting PC. If your PSA stays questionable, you (or more likely your Urologist) may want you to have a repeat biopsy some time later. As many as three series of biopsies might be needed over a period of a number of months in unusual circumstances. The need for 10 or 12 core samples is emphasized more and more nowadays.
The American Prostate Society recommends:
Biopsies are probably not needed ...in fact, recommends they not be done ...if ...the "free/total PSA" test (a special type of PSA test, that your doctor can order) is above 25% of your total PSA. The reason for the recommendation against biopsy for those men is that if at or above that percentage, it virtually eliminates the possibility of prostate cancer. Source: American Prostate Society, update Volume 8, Number 6, Fall, 2002. You can check with their website for the latest viewpoint, but I doubt it has changed.
If a biopsy comes back from the pathologist with a note using such words as 'atypical' or 'suspicious', do get a repeat biopsy after waiting for your first biopsies to heal, and consider having the samples sent out for a second opinion from another pathologist.
There are several ways for the lay person to think about Gleason scoring: A pathologist will evaluate the organization and the structure of the tissue from your biopsies. The pathologist looks at the cell centers, the nuclei, and assigns a Grade. The first area of a biopsy he analyzes is the largest one under the microscope. If close to normal, he assigns it a "1", if extremely distorted in shape, size, and nuclear discoloration, it may be rated as high as "5"; obviously there are in-between grades of 2, 3, and 4. A second area, less significant, is then analyzed. The two Grades are then combined for a Total Gleason Score, something like this: 3 + 4 = 7
The Gleason Score, to put this in my way of thinking, is a scoring of the amount of misshapen cells and thus the agressiveness of the bad cells. The pathologist will combine grading, and come up with a Gleason Score. A Gleason 1 means that the cancer at that place/biopsy sample, as looked at under the microscope, shows the cells nearly normal looking, and the tumor can be expected to be very slow growing. The Total Gleason Grading Score is what is commonly called 'The Gleason'. You may see it reported as two numbers, such as 3 + 4. Total Scores of 7 and higher are more serious. The first grading number is more important than the second number, that is, the number 3 in a Gleason of 3 + 4. My Gleason, at the pre-surgery biopsies was 3 + 4 = 7. This was reduced with the pathology at surgery-time to 3 + 3 = 6, which is better than 3 + 4.
Prostate cancer cells are difficult, if not the most difficult, for a pathologist to interpret. Pathologists make mistakes. Second opinions of the same tissue samples may be needed, and you may have to initiate such.
Gleason 1 is often called 'well-differentiated'. Gleason 4 and Gleason 5 means that the malignant cells are growing and aggressive.
You might see on your pathology report (be sure to get a copy) something like PIN, or Prostatic Intraepithelial Neoplasia. This means, if low grade, that it is not a forerunner of PC, and does not even belong in the report. High grade, however, can be a precursor of PC, should be in the report if found, and it was once believed that half of diagnosed high grade PIN men go on to develop cancer, latest research says about 1 out of 4.
Gleason Scores of 9 or 10, and maybe 8, should have you demanding relatively immediate treatment (in many instances). If you decide on surgery, the Urologist-surgeon will likely want the swelling of the prostate from the biopsies to go down ...that is, the prostate to shrink ...and he probably will have you wait a month or somewhat more, which is fine, as it is very important that the surgeon be able to do his job as best possible, and a large swollen prostate makes things harder on him.
Taking drugs to shrink the prostate is not a good idea prior to surgery, as it may heavily mask proper pathology of the tissue samples during surgery.
Once a Total Gleason Score is determined, the doctor tries to determine a Staging. Staging goes from essentially nothing found really bad, to very serious stages where the cancer has spread into various areas of the body. Once the cancer gets outside of the prostate gland (with maybe some leeway if only in the seminal vesicles), it spreads, and your prostate cancer is not curable.
It is possible for the PSA to be low, and you have cancer. If your PSA is rising a wee bit with every yearly test, doctors have charts for what type of rising is acceptable, and what is suspicious. I've put the basic important information for you well above in this article.
At the slightest suspicion showing something strange over a period of time, it is likely time for a biopsy. Putting this off can cause you major problems later on. However, keep in mind that your age and life expectancy and other considerations may well change that idea.
In my own situation, my PSA tests, & DRE checkups, were all quite normal for many years. One PSA test in 1995 was a teeny bit higher at 2.2 (who knows, I might have had sex the night before ...I did not then know about sex having an effect on the PSA test); &, any minor infection of the urinary tract (bladder, prostate, etc.) can raise the PSA. Most doctor's will ...or should ...have you on antibiotics for a 10 day period, then off for maybe 5 days or a week, then get re-tested, if your initial PSA test was a bit high. My PSA settled back down ...under 2 ...until 2000, when it reach 2.2 again. In 2001 it reached 2.8, still low. That means it rose, but not at a truly alarming rate (by standards then), unless that continued. The value was not high for my age either. Doctors, using the old guidelines, did not, then, anticipate problems when men have PSA readings under ~ 4.0. Some still think that way. That 4.0 idea is an old generality, and is now is thought obsolete by knowledgeable sources ....see information earlier in this article. The 4.0 value is obsolete! It is particularly obsolete if you consider why "The government" ""Recommends"" no PSA tests for the general population, with some caveats about age, past history, etc.
As you read this article, remember that my diagnosis and my surgery was in 2003. Radiation has improved since 2003. Surgery has improved since 2003. Outcomes, especially faster recovery ...and less or no urinary leakage ...is better. In many situations, possible even most, outcomes are very much better now.
So, when you read what happened to me, keep in mind that it is likely that you will have a better time of things.
I was due for my annual physical in March of 2002, but I had changed insurance carriers, and the new primary-care doctor (I had to select one and was finally assigned to him), did not, or his front office nurse did not, check off the place on the paperwork for a PSA test on my normal blood tests at that time. That was their mistake. I ignored not having the test, as my PSA had always been rather low. That was my mistake. When I next saw the doctor, near the end of 2002, I asked for the DRE and PSA test, and it came back at 5.9 ...a large jump. An antibiotics routine dropped it only to 5.4. Those readings were not overly alarming for my age (65) and charts, but the rate of increase was very suspicious. My PSA was 2.8 somewhat over a year earlier. This rate increase (also called velocity) was much higher than the 0.5-0.7 increase per year that was then usually considered reasonable. He referred me to a Urologist, who recommended 'a biopsy'. My biopsy was scheduled for March 2003.
The biopsy is not fun. It is not horrible. This is what my Urologist had me do, and he and his technician did/had me do:
1. Discontinue any type of aspirin or ibuprofen product for 10 days+, prior to the procedure, to lower any risk of bleeding. Other products on a list of things I was not to take were ginko biloba, vitamin E, Aleve, any vitamins, any medicinal herbs.
2. Have a very light meal and then clean my lower bowel out with a Fleet's or other water-based enema two hours before the biopsies.
3. I was given Cipro antibiotic tablets, and was to take one, one hour before the biopsies. After the biopsies I was to continue taking Cipro for three days (twice a day), drink lots of fluids, and watch for bloody urine and if any fever developed, of 101.5°F (confusingly one piece of literature provided to me said 100.4°) or higher, to notify the doctor. More on this later ...as I did have a problem, a serious side-effect problem, from the biopsies ...most men do not.
4. I was assigned to tiny room at the doctor's office, with the usual patient's table, and some equipment in the room. I undressed, and lay on my left side. First a technician inserted a small probe through my anus into my rectum. This was not painful in the slightest. He had an ultrasonic display, similar to one you have likely seen on medical TV shows that show a baby in the womb, etc. ...and he had a recorder for that information, and used this probe to 'map' the size and location of my prostate and make lots of knob twisting adjustments on the machine. This took maybe 5 minutes. Then came the biopsies. Most doctors will probably have an anesthetic gel they apply prior to the actual biopsies.
5. After the mapping mentioned above (I found out later, because I asked, the size of the prostate was 49 cc, I am not sure if that means anything for me), the Urologist came in and fiddled with the probe. Attached to the probe was some sort of biopsy needle. My understanding is that this thing is long, and about 0.050" in diameter, I can't say, I did not see it. Probably best not to see what is behind you (sorry for that pun). It is fashioned into something called a biopsy gun, and the doctor positioned this item, then called out ...for my benefit ...'1 ...2 ...3' ...and there was a popping noise and that needle jumped into me. The needle goes right through the rectum into the prostate. It also carries whatever nice germs it can, right along with it! That was why the doctor had me take CIPRO before ...and for the next 3 days. You probably would prefer this rectal method rather than another method I've read about that is in use, for prostate biopsies ...through the penis. I've not had that done, and I feel very squeamish about even reading about that procedure! But, I have no real information on it for you. If curious, look it up. The first biopsy tissue-taking sample was only a bit painful. 5 more followed. By the last one, it was definitely uncomfortable, and I was wincing. I would not have liked a dozen; but usually that is best. Sometimes a strong anesthetic gel is used, and there is no pain to speak of. Some men are more sensitive than others to pain from a biopsy. Sometimes during a biopsy a small vein is punctured, or a surface hemorrhoid, etc. ..and you could have a small amount of bleeding for a short period of time.
The biopsies were not screaming pain, and the doctor used no anesthetic gel, that I know of; I never asked him. The entire biopsy part was over in maybe three minutes. Would I do it all over again, knowing what would happen? ....I sure would. At least now I have a better chance at living out my normal lifetime. I had some infection complications from the biopsies, and in 2010 I removed the many paragraphs from this article that previously had a full description ....which included a high fever, hospitalization with bags of antibiotics, etc.
My biopsy samples had gone to a pathologist for interpretation and the pathologists 'estimate' of the "Gleason Score". Mine came back, quite some days later as: "3 + 4 = 7. That was this pathologist's report, and, just to make this quite clear, this was of biopsy tissue taken well before my surgery. That 3 + 4 = 7 is borderline between fair and not good. Anything from "= 8" upwards is BAD.
The written report came back as: Adenocarcinoma of the prostate. The Gleason Scoring identified cancer in two lobes of the prostate, and with techie stuff about how much % in what lobe, what area.
One of the samples came back a bit suspicious, for another type of cell, possibly from the prostate capsule being breached; and, the doctor started arrangements for me to have a Nuclear Bone Scan. My suspicions are that the Nuclear Bone Scan test was partly a "save-the-doctor-from-being-sued if he did not", type of test. Theoretically, that Bone Scan test will show if PC has spread into major body areas. In fairness, however, the test does help the doctor to 'work up' the disease staging. They never did, upon surgery, find any cancer cells outside the prostate gland.
Regarding this Nuclear Bone Scan. This whole body scan, totally painless, is done by first getting an injection of a very short-term acting radioactive element into an arm vein, coming back after 3 hours, and then lying flat and quiet in a huge machine for nearly an hour. It is something like a scanning X-ray. Bones take up the radioactive stuff more than regular tissue, especially cancerous bone. The results do not mean that no small groups of rogue PC cells were circulating in my body bones, taking up bad residency; just that the odds of it are less; or, rather, that it was not extensive enough to show up. The results came back negative for the Nuclear Bone Scan.
At this point, from the pathology, I knew that I had prostate cancer for awhile, it was of modestly high grade, and needed treatment.
The decision problem was what treatment. It was up to me to decide on the treatment, once having learned all I could about what treatments were available for my specific situation/tests/etc. My doctors were good at telling me the options. Better to be over-informed. Being the very nerdy engineer-sort, I now started into a tremendous amount of reading of various books, recognized official sources, purchasing a book of nearly 500 pages authored by a well-known expert in the field, etc. ...lots of etc. The Urologist had also given me a mess of literature to read. I had already previously been researching official, knowledgeable websites of several prostate cancer and general cancer organizations, sending for literature, etc. I now did a lot more of that. I went so far as to talk to doctors who were prominent in the field. I knew plenty of medical terminology, knew my way around doctors, so got some really good information. Even today I keep up with it. Some information is just not presented in such a way that laypersons can understand it ...and I am a trained engineer with a wide-ranging technical background. Some information is just plain wrong. You are reading the benefits from all my reading, discussions, and skepticism.
I talked to my Urologist; and asked for a second opinion, this time not from a surgeon, but a Radiologist-Oncologist. My reasoning was simple. There are three ways to treat my situation. I was not a great candidate for other options, like radioactive seeds, or many options were for more advanced or far advanced cases. I did not think my situation warranted Active Watchful Waiting.
My options were:
1. Do nothing, assume I will die of something else, or hope for new techniques & cures to be developed later on. In my estimation I was too young (65) for these options, & my Gleason Score too high.
2. Beam radiation of one sort or another. This scars you so much inside that #3 below is not a later option for most surgeons. There are usually much greater side-effects and complications. Some types of radiation are far easier on you, if you have to choose radiation as treatment. Investigate carefully. Conformal beam, proton beam, blah blah ...lots of radiation methods. This category probably should include the radioactive seeds methods. There are a number of things being done, including freezing, etc. None of these things fit me well. I will have a lot more to say about radiation in this article.
3. Serious surgery of which two types are available. One type, laparoscopic by various names, such as keyhole surgery, etc. Arthroscopic surgery is, for practical purposes the same. This is less invasive and you heal faster, but it has been less dependable for a cure, for a variety of reasons, at least that was so in 2003. This dependability for a cure, however, was/is increasing for that type of surgery and today I might well go for the laparoscopic method, but this is not universally true for all of you. DaVinci type surgery was not available with very well trained and experienced surgeons, back in 2003. I am not convinced of its value, even today.
In April, 2003, my PSA test came back higher, at 6.4. PSA's over 10 are not good news.
Appointments were made for a formal second opinion with the Radiologist-Oncologist. The Radiologist-Oncologist was quite frank, quite friendly, and informative. It surprised me that he, first, brought up the option of surgery, radiation afterwards if needed ...as probably the best for the widest range of options for me. I had expected a surgeon to promote cutting, a radiologist to promote radiation. I did not get self-centered pressures from either of them. Amazingly, so I thought, this also was the case with two other medical-field folks I consulted via E-mail. I have information that says you may not be so lucky, so be cautious. After meeting with him, I had nearly decided upon surgery.
I hated the idea of having to decide between two distasteful treatments (surgery or radiation). The worrying, thinking, whatever, was stressful. About once or twice a week in the time all the consulting was going on and well before surgery, and when my stress reached a very high level, I would chop up a Valium pill into 4 pieces ...or even 6, and take one teensy piece before bedtime. 2 mg did wonders for my ability to sleep for 5 or 6 hours. As I told a friend, or two, 'I would rather be back in combat, than have the surgery'.
I decided on radical surgery. Radical, here, used as a medical term, means total removal of the prostate. This allowed for a variety of treatments following the surgery, if such should be ever necessary. The method I chose, total removal, was the 'Gold Standard' for treatment at that time in my situation, but the recovery period was likely to be longer as opposed to laparoscopic surgery ...and longer yet due to my age (nearly 66) ...or; so I was informed by all the literature. The basic recovery did not really seem longer in any respect, to what I'd read, maybe I was just in better shape to start with, or the doctor more talented. I will have more to say later in this article about surgical methods for PC.
I met with my Urologist. I now knew enough to tell him, after some prior Internet searching about his qualifications & track record, what my choice was. I talked with the Urologist about his method of surgery and any decisions in the operating room based on pathology reports of the removed gland. I had already made the informed choice before meeting with him that he was going to be my surgeon. He was highly qualified, well thought of by his peers, had done hundreds of these surgeries, and with excellent outcomes.
In my questioning of my Urologist ...which was fairly detailed, ...he told me that he does not use hormonal therapy before the surgery in my situation. I found out why after reading more, as some books had mentioned it being used. The definitive books explained that using hormones prior to surgery might make the surgery a bit easier, as it shrinks the prostate, but it also can hide things from both the surgeon and especially the pathologist who will examine the tissues. It appeared my prospective surgeon was quite on top of every technique, as I questioned him about this, that, and other things. Do not misinterpret what I just said. In the cases where radiation is to be used instead of surgery, the use of hormones prior to radiation may be very helpful in increasing survival rates ...particularly when the cancer is Gleason 7 or higher, and/or the cancer is large. This pre-radiation hormone treatment might take several months; and it also may have side effects such as permanent erectile function problems.
I now wanted to crawl into a hole and make it all disappear.
This seems like an appropriate place to discuss treatment options in general. There are a lot of various treatments ...and the type (hormones, surgery, radiation, chemotherapy ....), depend on one's PC situation and condition. For me, I had what I believed to be good options, but without surgery, we'd never know the true extent of the cancer.
Radiation (of all types):
Starting with radiation treatment usually will keep you from having surgery later, although some doctor's might be convinced to do 'salvage surgery' if the radiation fails ...but the risk of side-effects after salvage surgery are far greater than if surgery is done first. Radiation can usually be done after surgery, if appropriate. Some people are not candidates for surgery ...due to age, advanced cancer, etc. Some cancer victims may have an advanced PC that indicates radiation is not a good idea. There are several versions of radiation available. That includes radioactive seeds, etc., that require simple surgery to implant. Locally, for me, one advanced technique, multiple beam conformal type, was available. It is done daily, 5 days a week normally, for about 5 or more weeks. The reason it is daily is to enable one to have continuing radiation to kill those cells that resisted dying and re-grew. You scar up inside, so most surgeon's won't do surgery afterwards if the radiation does not work. Radiation really is, to my way of thinking, sort of like putting some of your insides on a grill and being cooked. Possible side affects can be serious problems with urine and bowels. Impotence is a possibility too ...and that tends to not show up until a couple of years later. Selecting surgery and not radiation usually shows up impotence immediately, and if the nerves are left, one side or both, you may gradually regain potency.
The advantage to radiation is that no serious surgery is done, so you are not going to have a serious surgery type of recovery. A disadvantage to radiation is that you won't know if your cancer had spread ...unless other tests are done, and some tests, such as pathology of a removed prostate ...(& removed lymph nodes usually) ...are not part of radiation treatment. The big disadvantage to radiation first is that if radiation fails, your options are more limited to serious hormones, chemotherapy, etc., as used for an advanced cancer patient. As mentioned, most doctor's will not attempt a prostate removal after radiation treatments ...it is messy, hard to do, and serious side effects are far more likely. If you are having trouble making a decision about radiation versus surgery, do keep these things in mind. Do, however, investigate what I say here, and salvage surgery techniques may now be much better.
If you need serious treatment & you are not in reasonable physical condition to withstand some types of surgery, radiation probably will be strongly considered, as will hormonal treatment. So there are lots of treatments, including surgery, hormone suppression, various types of radiation ...and combinations. One common treatment is radiation first, and then hormonal treatment if the PSA starts to rise again. If you get surgery first, radiation is usually available later.
Do not forget that in many instances, some form of Watchful Waiting is appropriate. Do not decide for surgery or radiation without a lot of thinking and investigation!
For myself, I decided that leaving hormones and radiation for after surgery, if necessary, was the way to go.
Open type PC surgery tends to be bloody, possibly more bloody when doing something like trying to save your erection nerves (not sure about that). For conventional open type surgery I consider it a very good idea to give two units of your own blood (called Autologous blood) well ahead of time, even if your surgeon uses a 'cell-saver' during the operation. If giving your own blood in advance , the procedure is probably that, for a period of maybe 3 weeks ahead of your surgery date, you will, at one week intervals, go to a blood bank and give one unit (one pint) of your own blood, to be saved for your use in your own surgery ...if needed by the surgeon.
Laparoscopic surgery has a quicker healing time (but might have less chance at saving nerves?). I think the laparoscopic surgeons are getting much better. Laparoscopic surgery can have other names, including names associated with robotic surgery, etc. Improvements in surgical methods are quite good since my surgery in 2003. Some types of surgery, such as robotic, may be rather lengthy, which is not generally good for you ....but techniques are improving, so ask!
What can you expect after surgery? Two or three days perhaps in the hospital, some weeks of constantly improving recovery at home. Probably 'drains' coming out of one's abdomen for a short while (usually removed before leaving the hospital). A plastic tube (aka catheter) annoyingly and constantly up one's penis for a fair amount of time (2 weeks +-), while you heal internally. Having a urine collection container strapped on your leg so you can be mobile, or a larger type carryable around the house. Before and after the catheter is removed, you must learn to use your body bladder as the hollow bag muscle it really is, for keeping your urine inside you, doing Kegel (key-gull) exercises . Probably have to wear urine control pads or briefs or whatever type of continence control product you will prefer ...for quite awhile ...as you retrain muscles ...even well into the future, maybe forever, as you may still dribble some if lifting something heavy, or otherwise straining ...and hence wear a Depends or similar pad. Some very few patients never recover good control. While this information seems rather depressing, improvements in techniques have lessened the recovery period for probably the majority of patients, and more and more seem to have no urinary dribbling problems. I have gotten mostly very favorable reports since ~2009. Laparoscopic surgery, whether robotic-helped or not, has been greatly improved. It is a method to be carefully considered! Recovery generally is much faster and with fewer side-effects. A well-trained and very experienced surgeon using these techniques is a must!
For myself, I did not know if my adult lifetime of already doing Kegel's would help with incontinence after the surgery (yep, those exercises that enhance orgasms ...I'm always for better orgasms!!). I do recommend Kegel exercises ...before and certainly after surgery. Kegel's are great for one's sex life, cancer or not. After cancer treatment by removal of the prostate gland, you should understand that your bladder itself is one big muscle, and you can train it. Hopefully you will develop muscle control at the lower part of the bladder. Your surgeon cuts the urethra and cuts the lower part of the bladder away, and sews the remnants together ...and it is critical just how this is done. You may be lucky and keep one or both sets of erection nerves, and they might even, after all the bruising of surgery, work properly, or sort of, later ...maybe much later ...up to 2 years later in some cases. Whether to remove the nerves or not is something each surgeon needs to decide. You should discuss it before surgery. I think most surgeons will remove the nerves if they stick to the prostate; or, there is a question about the spread of the cancer.
I was lucky, I kept my erection nerves. They work.
Nerves gone? Vacuum pumps and Viagra, etc., do work for most (not all) men if the nerves are gone or seriously damaged. In any event, typically 'they say' you retain your sexual physical feelings and ability to have an orgasm (so long you don't have to take hormones). Some chit chat I have had with some who have kept their nerves tends to show that your retention of sexual and orgasmic feelings will be lessened, particularly in the first 6 months or so. If you ever have orgasms, they will always be dry orgasms. Your orgasms will not likely have the same feeling as before. You are not going to father any children, as the ducts from your testicles are going to be cut. Sort of a vasectomy. The ability to have an erection by stimulation may be with you naturally, or not, depending on many things, but Viagra, Levitra, Cialis, etc., may work. You may have a slightly shorter erect penis. If you kept your nerves, you will probably have a better luck with erections and orgasms, after awhile.
Open surgery was still 'THE Gold Standard' for treatment, when it is appropriate, back in 2003. Maybe less so now. Side effects are the usual post surgery items, but also incontinence, at least for awhile, is common, sometimes impotency. Death is unlikely from the surgery itself, but one rarely might hear of someone having a blood clot in a leg that travels to the lungs, and a host of other nice things. My Urologist informed me that after surgery I would awaken to find large long cuffs on my legs, driven by a pump-motor under the hospital bed. These inflate and deflate at short intervals, to help prevent blood clots. He uses general anesthesia, but with pain medication fed to the spinal area afterwards (epidural anesthesia). Open surgery is serious, can be lengthy, and the older one is, and the worse one's physical condition, the more chance of problems ...not to mention the surgeon's skill with incontinence and erectile non-functioning. It helps to not be fat and out of shape. The chances of the various side effects are dependent on the art and technique and experience of the surgeon. Obviously it also depends on how far the cancer has gone, so some fair portion of all this will depend on the extent of the cancer that the surgeon and pathologist find, in the hospital at time of surgery; ....and, that particular surgeon's approach to dealing with what he finds (I suggest you discuss things ahead of time).
Surgeons want to take some extra tissue (flesh!) around the prostate, to be sure that there are no or few cancer cells left anyplace. As usual, they have their own word-speak, and 'good surgical margins' means no infection found in the small amount of extra tissue that they remove. Or some such interpretation. They may also use terms like negative or positive surgical margins. You can and should ask your surgeon/urologist how he deals with things he finds, do this ahead of time, and be sure you both are in agreement!
BUT.....how do you find out about your surgeon's competence and abilities? In my situation, I had no hope of traveling to Johns Hopkins. Johns Hopkins Hospital has a terrific reputation of doing great work in the area of Prostate Cancer. It would be a first or near first choice by me for treatment if circumstances had been different for me. But, that does not mean I am 100% happy with everything that comes out of Johns Hopkins; ... I had read some disturbing reports on statements made by a certain doctor at Johns Hopkins in March of 2003 (not directly PC) ...in which this doctor was seeming giving wrong, highly inflated that is, data in statements on TURP procedure results; and, worse yet, regarding a treatment called PVP, he seemed to be making derogatory statements not founded in fact. My conclusion was that he had a personal interest in promoting certain methods. You can obtain a summary of this in the Volume 9, Number 2 Summer 2003 update of the American Prostate Society. Source cited at end of this article. Basically, this is a bit of side chit-chat, and I don't really expect you to obtain and read that.
I also was not about to trust the 'information' from Michael Milliken, who supposedly licked his serious prostate cancer by a radical diet change. I did some internet searching, talking to other doctors, etc. The Radiologist-Oncologist that I consulted for an examination and second opinion was very direct and friendly and informative; he even gave me the information that my Urologist had done his kidney stones ...(and vasectomy, when I mentioned our conversation to my Urologist). Nice little club. I paid a small fee for research into my Urologist's qualifications and standing. I also talked to just plain folks, finding these on my own. I did not ask the Urologist for a patient list. You could. I found some folks that knew some of his patients. Nothing but good things to say from any of them. I gave weight to input from the Radiologist/Oncologist who had had this same Urologist work on him (see earlier in this paragraph); and particularly I gave weight to the referral by my primary care physician ...a doctor for whom I have the very highest respect. I really lucked out when I selected his name originally when I changed insurance companies. If I had not been so confident of these folks, and other inputs, I would have been even more aggressive about looking into my Urologist's long-term success ...and failure ...rates. Words to the wise for you!
Some surgeons will not continue the operation if the lymph nodes (removed and checked by a pathologist while you are on the operating table) show cancer involvement, some will if the involvement is small. My Urologist and I agreed that the prostate removal surgery stops if a node shows serious cancer. If the surgery is stopped after pathology shows lymph full of cancer, then you have only radiation and anti-hormones (or castration) left as good treatments, so there is no good reason to continue the surgery, with its after-effects and long healing. Serious lymph involvement almost always means the cancer has spread. Cancer in the Vas Deferens is not limiting ...so I understand. Surgery just to remove and examine lymph nodes is sometimes done in combination with the other type of prostate removal, called the perineal approach. Getting to and removing the lymph nodes is a fair procedure in itself. If one's age and physical condition permit, I am not much in favor of the perineal approach, only the retropubic approach. The pelvic lymph nodes are the first place PC usually spreads to. Once well-established there, the cancer has probably spread elsewhere's, and removing the prostate might well not help you at all, and make things somewhat worse, the surgery is considerably more extensive to finish the surgery to remove the prostate. That is why the surgeon may want to stop if the lymph are infected badly.
Prostate cancer is fed by testosterone, the hormone that, in many ways, makes us men (did you know that women also have small amounts of it?). In later, more serious stages of prostate cancer, 'anti-hormones' (generic slang used by me here) are used (or castration, removal of the testes) to slow PC growth after it escapes the prostate ...and in some cases, before. Those escaped PC cells get into all sorts of things in your body eventually. Not all testosterone is made in your testes (balls), but the vast majority is.
Unfortunately, some cancer cells are not affected by the elimination of testosterone, and those hormone insensitive cancer cells keep growing. The percentage of hormone sensitive versus hormone insensitive cancer cells varies with individuals. Dying from prostate cancer is generally very unpleasant. The cancer spreads, and likes to take up lodging in bones, where it creates intense, hard to get rid of pain, that requires rather high doses of opiates, or perhaps treatment by radium compounds, but in the case of opiates, dosages can eventually be so high that you don't get to have much of a life. It can also spread into all sorts of other areas, wreaking havoc. Because of the sensitive and not-sensitive nature of the cancer cells ...and the percentage of each of which varies ...cancer that has spread is never treated with the idea of treatment being a cure ...at least that is unlikely, probably for the foreseeable future. The idea will be to slow the cancer growth. Sometimes the slowing can be substantial ...but also too often one dies too quickly ...whatever that means.
My prostate cancer ....down to the nitty gritty.
This section, while lengthy, is certainly much shorter than when I first wrote this article, after all, this article is for you. Still, I want you to know how I prepared, mentally and physically, & what I went through, etc. You probably will have a much easier time of it! There have been goodly improvements since 2003 in surgery, radiation, hormonal and other treatments. Maybe this section will help you.
I decided that just facing up to things early on ('facing up to', is not decision making as to treatment!), and sharing my feelings, and information, was what I should do with my friends, and even with those I barely knew, if they asked. All of this discussion definitely helped reinforce my resolve. Each piece of literature I read helped me to understand other pieces of literature. Questioning my Urologist, and the Radiologist-Oncologist, answered nearly all the rest of the sub-questions. I also contacted several Prostate organizations/groups, etc. Walsh's very thick paperback was the best, generally, of all the books ...including those on loan from my Urologist. Walsh's book explained quite a few things where other books and literature could be confusing. Walsh's book also added much information. Some prostate organizations also had some literature available, I sent for those things, and some was quite helpful. By reading a huge amount of literature, one gets, finally, a nearly full explanation. I also was in contact with top doctors, including those doing research. Some final information was only obtained by dogged investigation, and talking to some experts in the field ...do not take this simple sentence lightly.
My biopsy Gleason was 3 + 4 = 7. My staging at that time was some type of T2, my Radiologist guessed at T2a. The Urologist said T2. What I worried about most was if the cancer had spread. Lymph nodes. Bones. The Nuclear Bone Scan is known to be in-accurate about 25% of the time. There are other places besides bones. Here we go, another place for worrisome percentages! What I was not worried about was erection problems ...well, not overly. I was more worried about incontinence after surgery; ...more than a few men had permanent problems back in 2003. I was only modestly concerned about dying of prostate cancer ...concerns about an early ugly death, would be dealt with after I did whatever treatment would be the initial choice. Men vary in what they worry about. I wanted to stay alive, in reasonable happiness, and think about retiring and riding my motorcycles, and having some fun. I'd worked hard a large part of my life to prepare for retirement. Now was not the time to shrivel up and feel sorry for myself. As it ended up, I had some incontinence that never went away, but was handled, eventually by one Depends pad a day. I had no erection problems. As of late 2016 I was still working a few hours a week. It kept me busy, & out of bars as they say .....and, the small income was nice, and I liked feeling useful.
Unfortunately, in early 2003, pre-surgery, it was time to worry, have some sleepless nights, and have to make serious decisions. It was also a time to deal with doctor's, hospitals, labs, and .........the medical insurance company.
I did not truly feel ...mentally ...like doing anything but hanging around the house. Luckily, a friend of mine tended to get me off my butt. We spent the Easter weekend together, we went to Church services; we went to Del Mar to see The Night Of The Horse, eating a picnic 'dinner' right at the show (GREAT SHOW); and, we attended Easter Sunday services outdoors. We had Easter Sunday dinner with family. I drove back to my half-owned condo in Palm Springs mid-evening on that Sunday. I had intended to go back earlier, and spend some time alone, thinking. Probably just as well that I did not spend much time at that.
In April 2003, ...I had a decision day. This was the day, the appointment at my Urologist's, at which I was to state verbally my choice of treatment. I was under a lot of stress. I was nervous. I had a sour stomach. I was mentally committed to open surgery, the Gold Standard. the Urologist and I had a good discussion. I told him that my decision was to have him perform radical retropubic surgery, as soon as he could arrange it. The surgery was then scheduled for a later date than I really wanted, but this was likely in line with the 6-8 weeks of healing after biopsies that was wanted by the doctor. We discussed trying to save the erection nerves only if safe to do so, and several other things. I agreed with his view and policy that if major lymph node involvement was seen, that the surgery would be stopped, and I would then, after a month or so, be going to the Radiologist-Oncologist. If the PSA began to seriously rise again at some later date after the full surgery, the Radiologist-Oncologist was the backup treatment; this was agreed to be the way to go. Unsaid at the time, but probably known to both of us, was use of hormonal therapy as the first backup, rather than radiation, unless a cancer recurrence could be found in a concentrated area. Looking back on it all, the decisions were good ones. I failed to ask the Urologist nor radiation oncologist what to do if my PSA began to rise, years later, and no evidence of the location of the PC could be found. At what PSA level is treatment initiated? It was not something anyone much spoke about anyway, other than to assume that a testosterone blocking drug would be used. I think it would only have been my intense curiosity anyway, to even discuss it.
With the surgery option decided-upon, and the major important details agreed upon, at this point it was now up to the Urologist's office to get an approval for the surgery from my insurance carrier. Then we would obtain a surgical date. I was to 'donate' blood, for myself. This is called autologous blood. Approval for the autologous blood drawing was needed. Medicare, not the insurance company, was involved with autologous blood donations. Details, details. I found out from the surgical report after the operation that I had lost an estimated 600 cc of blood, about 200 of that was put back into me. After the surgery, during recovery, one of my units of blood was also returned to me. The biopsies area was still in healing mode, the cancer likely slow growing, so I understood why the surgery was not put on an emergency basis, but I was still very concerned about this 'thing' in me, cancer, growing. I wanted it out of me ...yet I hated the method of removal! Actually, I did not like thinking about any of it ...not at all.
In the three weeks before the surgery i was to have two (2) self-donated (autologous) blood units collected ...the Blood Bank literature says they hold blood for 42 days, but the Urologist said 3 weeks. Never found out about that discrepancy. I thought about the schedule, & with a look at a calendar, I decided to have the blood taken a week apart, then to have 8 more days before surgery, to allow my body to rebuild my blood before the surgery. They were to call me when approval for the autologous blood-letting was had. I had to follow up on this rather considerably. Frankly, I found that I had to follow-up on a lot of things for myself. Meanwhile, I had already started taking iron pills, two per day per the Urologist. Iron pills can be very constipating. Plums and other natural fiber containing foods (particularly strawberries!) are tasty though. I went back to my Tahoe home to do many things, as my next trip to the condo would likely be the trip for the blood-letting, then the surgery, and then a fair amount of recovery time.
Finally I had a confirmed date for the surgery in May 2003. I then arranged for the blood-letting schedule exactly as I thought it should be. I stopped taking the small amount of aspirin that I normally take every day; the idea (surgeon's) was to lessen surgery area bleeding, which makes things complicated for the surgeon.
I now had things to do like an updated Will and a updated Durable Power of Attorney for Health Care. I finished those on May 1. I returned to Palm Springs on May 2, 2003. I quit taking vitamins and aspirin, but was still on iron pills and strawberries ...for the constipation caused by iron pills. I found it very wise to continue eating lots of strawberries (prunes? figs?) for some time after the surgery.
May 4th: No alcohol from now on until well after the surgery. I seemed to have lost any appetite for alcohol. Probably the stresssss ...ah, yes, stress. All sorts of things ran though my mind at times. I thought about the surgery when I lay down at night to go to sleep ...and sometimes when I woke in the morning before getting out of bed, and sometimes for no good reason I can think of, during the day. I had a sour stomach in the morning at times, likely from all this thinking and emotional response. No wonder my appetite for beer, wine, Scotch, and a good cigar was in remission (I was sure it was just temporary, it was not)!
May 5th: Preparations for the surgery begin more seriously. It is time to go to the Blood Bank, deal with paperwork, insurance, Medicare (blood bank gets paid by Medicare), and ...oh yes! ...giving a unit of blood. Giving a unit of blood takes 12 minutes of paperwork for the first unit (2 minutes for the second one a week later), and 4 minutes of nurse preparations, and 5 minutes of totally painless blood-letting while one could, if one wanted to, suck on a bottle of water. If you want to, you get to look down from your reclined position, see the complicated looking plastic bag being rocked back and forth by the machine it sits on. During that first unit draw, I remember wondering about the Heparin, an anti-coagulant, that they put into that blood. What would happen if that was put into me at the time of surgery ...or afterwards? ...would I tend to bleed more? Would the heparin in that blood unit defeat my being so careful not to take aspirin? Never did ask about that. Probably would not affect things, way more than one unit of blood in a human, the one unit would be diluted greatly. Maybe. Still curious. Maybe some day I will ask someone associated with a blood bank; or a doctor, or both.
After the vampire attack, I got off the blood-letting table & then I got to go off any diet I might have been on, & enjoyed what snacks were there for me, as I was informed to sit for 15 minutes in the lobby so they are sure that I was feeling OK. I am sure they did not want me driving and passing out. I felt just fine, & treated myself to a 'single serving package' of chocolate chip cookies (containing two, huge, in one package), & a half cup of coffee, plus some water. Orange juice, soft drinks, other bad sugary things ...all there, waiting for the appropriate taste buds. I noted that two other people, who were snacking like I was, tended to like the same chocolate chip cookies.
May 12th: Time for another unit of blood to be drawn by the kindly vampires at the BloodBank. On this second visit, they said nothing about the lobby waiting period after my vital red fluid removal. I did it anyway, as I was now an expert at not only giving essence to their plastic bag, but in locating the chocolate chip cookies. I noted the various types of plaques on the wall ...some were pictures or maybe a name or more than one name, of some folks who donated regularly ...for use by other folks ...The Gallon Club ...etc. I'd been told not to donate blood, after some mysterious and undefined viral attack in VietNam.
May 15th: Telephoned the Pre-op department at the hospital. Made an appointment.
Weekend: Drove 120 miles to spend some time with a close friend and see some other folks, attend the old motorcycle parts sale at Irv Seaver's BMW, and generally take my mind off things ...sorta! My friend would later meet me in Palm Springs.
May 19th: Off to the hospital for pre-ops testing and lots of paperwork. Surgery was "still" set for the next day. The pre-ops is almost factory-like, efficient, friendly.
I am not happy with things, I'd rather run away to the mountains, than face all this.
May 20th: Within an hour of arriving at the hospital ...(why is surgery always scheduled for early morning ...7:45a.m. ...when I am not ready for anything but coffee and the daily paper?) ...I am under the knife. I found out later that that actual surgery took about 1-1/2 hours, prep and cleanup made it bit longer. I was told by my Urologist that the 'erection nerves' slid right off the prostate capsule, not 'stuck or glued-like'. Always the curious type, I still wonder what nerves look like. But, the information on the nerves sliding right off was good, this meant that the nerves had no involvement and could be, and were, 'saved'. Maybe saved to work again at some future date? I could hope so (they do work pretty well). Sometimes 'saved nerves' don't regain function. It would likely be awhile before they could actually starting working again, the trauma from surgery 'does things to the body'. I have had conflicting reports on these nerves and how they repair themselves ...or don't ...from any trauma, bruising, whatever, over time. What is true, is that if the nerves are left, undamaged except minor bruising, they have a good chance of functioning again. Radiation, on the other hand, usually leaves the nerves functioning for awhile, then kills them within 2 years.
I stayed in the hospital until the third day.. I did not feel up to leaving on the 2nd day when when asked to do so; this was my choice. I was barely up to leaving on the 3rd. Yes, they tried to rush me out, 49 or 50 hours after the surgery! Frankly, I still feel a bit of insurance company type of pressure on the surgeon had something to do with this, but this is pure speculation. I was at the hospital a total of about 80 hours. The billing was about $1,000.00 per hour, averaged. At the hospital I found my appetite near zero, could hardly eat, .....yet, with all the IV fluids, and drinking of water, and retention and urination; ...somehow, ...I put on 10 pounds! I suspect a lot of swelling over my whole body was most of the cause. I could eat only by forcing myself, a darn shame as that hospital has a semi-gourmet printed menu, and you order by room phone! I was impressed. I kept a printed menu ...in color with pictures no less. At first I was on a thin liquid diet unfortunately, and the Urologist's order to go a regular diet got mislaid somehow ...and I knew it had been changed, so I complained, and this was fixed. So, I got 1-1/2 meals, so-to-speak, before discharge, of quality gourmet food. Finally I ate eggs, yoghurt, juices, cereal, French toast. Shame I did not enjoy that special menu more; like for lunch and dinner. Still, I thought I would not try to find any special reason to go back and explore gastronomic delights at that hospital.
Ah, yes, trauma to the body! I can attest to that! I had, for about a week after the surgery, hot flashes! Good thing I was mostly inside the air-conditioned house ...with the ability to put on and take off clothes, instantly (as instantly as my pain allowed). It was quite hot in Palm Springs ...outside, a bit over-normal for May. The doctor said that all sorts of strange things could come about, temporarily, as the trauma to the body resolves. I found that to be so.
While in the hospital I had a small drain (tiny tube) coming out of my lower abdomen, usually called a JP drain, removed after a day and a half. It fed a small squeeze bottle ...cute thing, it was like a perfume bottle, most are just a very small plastic bag. It was emptied and measured, like all emitted body fluids, regularly at the hospital. I still had the final Foley catheter, #20 French for those interested, which I was taught how to use properly (how to change between the large bag and a leg bag when appropriate) before my leaving the hospital. It was mildly annoying, not painful. It would likely be removed in about 2+ weeks (so I had read in the various books). I knew that it was critical that the Foley catheter remain in place while the joining-suturing of the urethra and bladder healed. That sutured (suture is a fancy name for sewed) place is the 'Anastomosis'. The Foley catheter was held in place, (besides its internal balloon), with a sort of, outside my belly, common clothes-type 'button', with nylon suture material, said material leading inside into and through the bladder wall, and tied to the catheter. One of the annoyances after the surgery, besides dealing with tender bowels, pain, and strange symptoms, is putting up with the Foley, one must keep it sanitary, at the penis-to-catheter junction, to avoid infection, ...you carry it with you ...a must, since it is tied to you! ...and you get to empty the bag, etc. Some doctors will have you clean the penis tip area and use Neosporin or other antibiotic cream ointment there. There is a small 'leg bag' for when one wants to put on pants and move about in society. That leg bag never worked particularly well for me some of the time. I went out once and I had a nice embarrassing leak, from the Foley catheter well above the bag area, at the penis tip. I simply grinned (grimaced?) mentally; and, ignored what I assumed was every person within a mile staring at my wet pants. Likely no one stared of course. Reminded me of the time I landed a small airplane at Concord-Buchanan field, dressed in 60's paisley clothing and ...ooops ...another story for around the campfires.
Back at the condo, I avoided putting on any clothing except a large T-shirt, and some old military-acquired hospital anti-skid socks ...even in my condo patio (the patio has 6 foot high walls). The reason was extreme sensitivity of the incision/staples area to touch ...especially the re-growing belly hairs ...when touched even lightly by clothing, it was like needles ...big ones. It was interesting to see the facial effects on those friends who visited me during that first week++. No pants, a shirt, a catheter, urine bag, very hugely swollen testes & penis, with a tube coming out of it, 6 inches of so of metal staples down my middle ...you get the idea. Depending on the visitor, I 'kept it all' somewhat hidden behind a robe; ...my attempt at some sort of decorum and modesty. Unfortunately for some of my friends (I don't really have much modesty, never did), I left the robe barely (pun intended) on me, and I got some perverse pleasure out of my shocking appearance. Perhaps that attitude helped me heal.
To tell the truth, I'm the type that will not think twice about kissing my sweety in public; nor, think much about my usual summer at-home attire ...Levi cutoffs, short, old, tattered. It helps to get away with this by being physically gym-toned. Wearing this type of clothing and a raccoon hat on one's head when camping in the woods ...tends to get one a reputation ...of some sort ...or ...whatever. I have a modicum (more than a modicum) of perverseness; ...among my other great attributes ...and, I suppose, some almost gallows-humor ....all of which probably helped me deal with the present situation.
In the hospital, pain was wonderfully managed by the teeny catheter in my back/spine (epidural anesthesia), but the day before release day, I was put on small amounts of codeine, the back attached catheter removed. I think, with hindsight, that the catheter in my spine should have been left in another day, until my actual release, which should have been the fourth day, not morning of the third (and they tried to make it the second!). There are seemingly no side-effects to that catheter method. I did not suffer any headaches, which I had always heard was a possibility with 'spinals' ....I was told that headaches were unlikely for this particular type of spine-fed pain reducing, especially for adults, even for someone like myself who has had migraine-like headaches for decades. It was true. I got up the next day at the hospital, walked around, had not the slightest headache ...nor were my legs, etc., feeling any numbness. I was very sore, and found it difficult to do that walking, but I forced myself, knowing it was very good for me, and the staff thought it good that I wanted to.
All the I.V. connections were removed just before I left the hospital. One side-affect I had while at the hospital was a very bad case of gas pains. That was not cured immediately by taking anything for it, and I gave up on taking anything for it. I actually think these gas pains were far worse than any pain from the incision. Worse if I coughed ...really bad pain! The gas pains seemed to ease up on the last hospital day, and mostly disappeared after I got home, then returned somewhat, then disappeared about the 5th day after surgery.
For about a week+ I was fairly uncomfortable sitting. That finally disappeared totally as I approached the third week. However, some slight internal 'feeling' ...in the rectal area, lasted for a couple of months. For the first two weeks I was not happy sitting at my computer. I was also well aware that I should not sit in one place for long, to avoid Deep-Vein-Thrombosis. I did foot exercises all the time, to pump blood around. The window for DVT is from the time of surgery to about a month, with the first week and a half as the most dangerous. In the hospital, constantly inflating and deflating cuffs on my legs were used. At home, I did those foot exercises ...and walked.
Re-cooperating at home was in some ways easier than at the hospital, in some ways more difficult. The hardest part, in the beginning, was the same as at the hospital (even with the hospital's very fancy adjustable bed) ...getting in and out of bed ...or a couch. There was also the mentioned uncomfortable sitting in my computer chair ...and even when standing up for any period of time. I did, after all, have an incision, a big one, and a whole bunch of me had been seriously cut into. I had Tylenol with codeine for pain, which I used in rather small amounts for one day. I chose to have some pain; because avoiding constipation was a constant concern, and I did not want to use the codeine, which is very constipating, and other strong pain killers don't work well for me. My method of choice for the constipation was a lot of high fiber fruit, and that meant massive amounts of strawberries; and, of course, lots of water. I forgot that prunes and figs were very good for this, unfortunately, but, it was fresh strawberry season. I also ate bran cereal, and live-culture yogurts. I treated myself to fat-free bran cookies at around the second week+. I am the sort of person who will find all sorts of ways to skimp on $ for some things (cheapskate), but will pay almost any amount of $ for the best fruit (and best mechanics' tools sometimes!); ...and so this continued for the fruit. Friends brought me lots of strawberries. I could never eat them all when fresh, so I cooked all sorts of things with them that would last awhile in the refrigerator.
I found that the re-growing hairs on my stomach were, in one area particularly, staying super-sensitive. Any shirt movement on them was quite painful. This lasted some time, about two weeks, slowly decreasing. Few other patients I know of, have had this to the extent I did. Most patients do not have nearly the symptoms during recovery that I had. I think this may be due to the better surgical techniques, as time goes on, since my surgery in 2003. For such serious surgery, the side-affects, in the very beginning, were not very much ...to my way of thinking. Little did I really know (book reading is not "knowing"!) about the coming incontinence & the need to deal with constipation and avoiding hard stools, all for longer than I had thought.
For about 10 days I was taking an antibiotic.
I had an appointment with the Urologist about 2 weeks following the surgery.
More about post-surgery complications & problems:
Some blood leakage and big swelling into the scrotum & penis area which finally went away after a week. I should have taken a picture. I suspect that this was not too abnormal ....those cut lymph nodes, small bleeder veins, etc., need to drain someplace, while they make new pathways for themselves.
A medium sized rectal hemorrhoid that shrunk adequately, then disappeared, in about the same amount of time.
One or two substantial floaters, probably blood, inside my left eye. I worked on getting an appointment with an ophthalmologist, who saw no tear in the retina, etc., but, just in case, referred me to a retina specialist. That specialist saw no immediate problem, but cautioned me on what to watch out for. No connection to the surgery was made ...and the floaters disappeared in a few weeks.
Very early-on after I left the hospital I had one rather bad night of warm bottoms of my feet ...and the next morning my feet were quite sore when I tried to walk. Some calf soreness was apparent for about a week & I exercised my feet fore and aft to try to relieve that. The foot soreness lasted a long time, actually. Naturally, that first sore foot morning was the morning, 5 days after surgery, when I scheduled myself for a first outdoors walk around the condo complex. This pain in my feet and some in my calves, was very worrisome, as I was concerned about deep-vein thrombosis (DVT), a possible killer. I saw my physician about 9 days after surgery, when it had let up some but mentally bothered me, he put me back on aspirin, and said to watch it, and if not resolved in several days, he'd have a DVT scan done. It resolved enough ...but I kept my hospital bands on my right wrist ...for fast admission without hassles, for a full month. For the first two weeks I kept within a few miles of a hospital. Most of the men I have talked to that had this surgery did not have my foot pains. My suspicion is that the lymph was draining downward, and making my feet sore.
Urine had been a bit bloody after the surgery ...sometimes more than a bit, and cleared up some, then turned a bit bloody again. That resolved within maybe 5 days after release. This was normal.
It hurt quite a bit if I coughed ...for the first 5 or 6 days after surgery. In fact, coughing was about the only time I really hurt badly. The pain lasted only a few seconds though. I got adept at careful coughing. I had not taken any pain medications beyond the first day at home; that one codeine pill, and did not need any, which surprised me. Almost all prostate surgery patients will have pain if they cough, during the first couple of weeks or so. Bowel movements were a constant problem ...it felt like my colon outlet to my rectum had decreased in size and was traumatized. I did not use strong laxatives, preferring natural foods. One can not bear down with one's internal muscles after this operation, at least not the first week. You have some of these rectal muscles cut during surgery ...and the prostate sits on the rectum. Bearing down hurts! ...one needs lots of healing time! I was still kind of tender in that area, even well into early June ...and a bit of it still left well into July, although any need to use quantities of really high fiber foods greatly lessened within 2 months. Some surgery patients have informed me that they have not had the problems like I did.
7 days since surgery:
I put on the leg urine bag, put on floppy trousers, a T-shirt, nothing else but tennis shoes, and went for a walk. Already nearing 80°F, not even 8 a.m ...headed for 108°F today ...got in several blocks, before I felt a bit tired and returned. Walking with no underwear, and with the catheter and bag ...was "interesting". Visits by friends over the last week or so was much appreciated ...one in particular brought me fresh fruit every day or two. The visits were the most appreciated of anything. I especially enjoyed the enormous amounts of fresh strawberries these friends often brought ....nothing like tasty high fiber foods for my constipation! I ate strawberries in every way imaginable.
The next day I went for a longer and slightly brisk walk, leaving me a bit sweaty ...but not so tired like yesterday after I returned. Feet and right calf still ache some, but trend is towards better ...and some areas of body swelling are lessening, and my tissues are giving up some of their excessive fluids. Went to the Miata, simulated driving it, pushing in clutch, etc. ...no problems, so could drive if I absolutely had to. I did not want to, as I could not handle the heat, if I should have had a flat tire, etc. Just in case, made sure I had fresh water container in the Miata trunk. I'm still sort of stuck to being around the condo. I think it best to not push things too fast. Outside the condo, the temperature officially was 108°F by 2:30 p.m.
10 days post-surgery:
I've been making a point of getting up early to avoid the heat, and then going for a rather brisk walk, lasting nearly 15 minutes. Felt pretty good. Bowel area pain is closer to OK, and seem to be getting better, but still tender. My choice of lots of strawberries works OK. I would not want hard dry stools at this point. I am enjoying fresh berries, cooked berries, berries on ice cream (I am reducing SOME on fattening dairy products though), berries on waffles,,,,etc. One day I had a neighbor and my roommate stop by a produce stand on a jaunt they were on, and they had purchased an entire lug of strawberries. I could not eat them all within even days before they would spoil ...so I cooked a lot of them ...froze them, ate them, refrigerated them, found excuses for making waffles, pancakes ...etc. I'd been making lots of fresh lemonade from the lemons from my trees, eating tangerines from my tree, etc. Life is looking up some. My incision has healed a great deal. There is no longer any truly painful area. The Foley catheter is only a nuisance. The leg bag for the catheter did not always work well, twice I have seen the catheter leak, due to the bag internal valve not opening properly ...twice now in public ...once badly ...in the Supermarket ...that I finally felt up to driving to. So what! ...I found almost any modesty concerns gone. Frankly, I have never had much modesty, and any I did have previously, is now hard to find.
I felt up to mild light-exertion house cleaning, and also started developing and doing some exceptionally mild at-home exercises. I could have gone to the gym but was being very conservative. I noticed, the third time recently, that I had a spontaneous mini-erection. Strangely, that did not happen again, for several months. I suspect the traumatized nerves were having fun. I hoped they enjoyed themselves, and would be up to my enjoying them more fully in the future.
I obtained a copy of the 'surgical notes'; and, as I had been told at the hospital, no cancer was found in the lymph; no cancer was found in the seminal vesicles; no cancer was found in the vas deferens ...and, the prostate pathology was a 3 + 3 = Gleason 6, which was better than the biopsy Gleason score of 3 + 4 = 7. No spreading/penetration, and 'apical bladder neck and radial surgical margins negative for malignancy'. My Urologist/surgeon had told me these details in much more brief fashion the morning after the surgery: ...he said: "I like being able to give good news to patients after surgery". Certainly made me feel a better. I had an appointment with the Urologist about 2 weeks post-surgery, and from him I also obtained copies of the surgical .....and pathology reports. Final pathology, in brief: 3 + 3 = 6, T2, NO. That T2 means two lobes of the prostate had cancer, that 'NO' is another type of grading, not a 'no' as in NOthing found, or NOT found. Here, 'NO' that means that no spreading (metastasis) of cancer in the lymph was seen. N1 would mean spreading to the lymph, and if N1, the operation would have been stopped.
The Urologist cut the button suture, removed the staples, deflated the Foley, and removed it and the suture material, all at the same time, and rather quickly. I should have saved the stuff ...would have made nice engine gas line. Yeah, yeah, perverse humor. Re: removal of the Foley: Not too bad, not great feeling, not too bad.
Before leaving the Urologist's office where the Foley was removed, I was given two Cipro tablets, one for right then, one for the next day. I was to watch out for any infection, unlikely as it is, and I was told that one possible problem (if it occurred it might be in two weeks or so) ...a restricting of the bladder outlet, rather easily curable though, if one appreciates a device to cut things, being pushed up ones penis/urethra. I hoped not to have to appreciate such a device. No urinary restrictions were noted, even many years later, and I can pee just fine, much better than at some time previous to the surgery. Otherwise, per the doctor, I was on my own. He gave me no guidelines. I mentioned to him that I had never received any instructions or guidelines for pre-, nor post-, operation, I did that mentioning in such a way that maybe he would do something about that for future patients. He probably let that one in and out his ears. He offered no guidelines during this visit either. It was not hard to assume that I'd better not be hoisting motorcycles around in my garage, nor lift heavy weights, nor do a 80 mile forced march with a backpack.
While at the doctor's office, immediately upon the catheter removal, a small amount of urine leaked. The urine stung! It was that way for awhile that day. I asked the doctor about recommendations for urine control pads/briefs. The nice, young, cute nurse ...(they are all nice, young, & cute, at my age, 66 then), ...comes in, I'm naked, neither of us embarrassed in the slightest, and gave me, upon my request, a Men's urine control pad, Depends, which I could now use, or a generic cheaper version (many generic pads, as I found over the years, are not as good as the Depends brand, but I suggest you try them all and then decide for yourself), instead of the annoying collection bag.
NOTE: many men, during the time they have the Foley catheter, will have a very slight leakage of urine at the penis tip, which will sting a bit. That is fairly normal ...just keep the tip clean ...and avoid bacterial infections ...keep an eye out for that.
At this same Urologist's appointment, I obtained the various reports for the primary care physician, at his request. The next morning, June 6th, ...I delivered them ...on the way to a very light gym workout ...my first in some time. It went well. The pads are a nuisance. I will continue doing Kegel's whenever I remember ...which can be in front of the TV, sitting here at the computer, when urinating, when driving, whatever. Kegel's are supposed to be the secret to getting full urine control. So I've been told. Frankly, the leakage is a substantial problem to deal with, in many ways, in the beginning. The thought that some few men never regain "good" urine control bugged me. I knew what the books said about gaining control. I was impatient, and the incontinence was interfering with the lifestyle I wanted ...but, I actually just got used to it, it became just one of those things in life one deals with. The Kegel's did work, and I gained reasonable control later....but I have never gained full control. Now-a-days, most men do regain much better control than I have.
Kegel exercises are best done, especially in the beginning, by combining quick ones with longer stronger ones, but do not overdo these. The object is to increase muscle size and strength (bladder muscle) and not to see how tired you can make the muscle by doing dozens of repetitions in 10 minutes. Later, the best Kegels are ones that are held, strongly for a count of 10 seconds.
I was now doing Kegel's without the catheter. Often. More than often. The incontinence was quite an annoyance. In this beginning period I went through quite a number of pads every day, 4 or 5, but the trend was to less, and by early July I was using the same one from just before going to bed the night before, to mid-morning. However, I might use 2 or even 4 during the day. That usage continued for a long time. As per the books I read, the first place one gains control, of sorts, is lying down; then, comes sitting. Last comes standing, and maybe never 100% if straining, such as lifting something. Doing the Kegel exercises was the way to gaining continence control... yeah, yeah, yeah. I assumed that the stronger I could make this muscle control the urethra, the better, and I was right.
***NOTE: This is my opinion here: The real secret to gaining control is to do at least one Kegel, standing, every time one urinates. Holding that Kegel for several seconds, 10 seconds if you can, is vital for a faster recovery. I failed to do this strongly enough in the first three months. Muscle tissue must be exercised, just as one might do at a gym, if one is to gain muscle size, strength, and tone. All of these are needed. If one was to not do Kegels strongly enough ...and especially if not done to the point the muscle is a bit tired, then you will not, overall, gain the results you want, fast enough. I now do the Kegel's strongly, and hold them considerably, to the point that I can feel the muscle getting tired. I suggest a good strong Kegel, and not a large number of small ones at the same time.
MOST of the men I have spoken to since very roughly 2008 or so, have had much fewer problems with incontinence.
3 weeks since the surgery:
I was doing OK. Except for some bowel pain ...and the incontinence. I packed the Miata for the long trip back to my main home at Lake Tahoe. I spent some time nude sun-tanning. One of my body-building bud's telephoned and he is coming by for one of his regular visits, this afternoon. I look forward to chatting with him. I'm bored. Spending too much time on the three motorcycles E-mail Lists I am a member of.
I left from Palm Springs for the nearly 500 mile drive to Tahoe. Was a 4 pad day.
I practiced Kegel's during the drive. Got about 5 hours of sleep that night, and had the same pad all night and well into the morning, and noticed that I had at least some control now. I really hope this sudden change portends good things. My hope level is higher. I was very tired from the trip, and 6000 feet of altitude change.
I had arranged my schedule to return to Palm Springs in July, and I had my blood drawn for a PSA test that same day. I had an appointment with the Urologist. He told me I am doing fine as expected, and the incontinence would likely get better soon ...and to keep doing the Kegel exercises. The results of the PSA test were 0.1 (the lowest limit of that particular testing machine), and that was good news. That means that there are no signs of any of the prostate cancer having spread. I am scheduled for a repeat PSA test, and a visit with that Urologist, in 6 months ....which will be January 2004.
Being very conservative, it was only on the one month anniversary from the surgery that I cut the last of the hospital bands off my right wrist (passing the one month danger period for possible Deep Vein Thrombosis). I was back at the gym, gaining back some strength, flexibility, and being careful not to overdo things. I was again, as before the surgery, doing exercises that stretch the abdominal muscles ...but now also doing them for the additional benefit of avoiding having excessive internal scar tissue. I can do all my normal exercises, but most I had to do at much lighter weights ...although I slowly began to increase weights until nearly 80% of normal, by the two month point. The urine control in bed at night improved, and frankly not bad at all, no pad changes have been necessary at night after a month; ...although sometimes I woke up and felt the urge to empty my bladder, one to three times a night. That was no longer true after some time ....but, even in 2017 when I am updating this article, my pad usage remains at one per day.
Back to 2003. Because of the insufficient bladder muscle control, I could not allow my bladder to get too full, although I saw improvement. My bladder initially felt like it had a quite small capacity, which was probably true to some degree, but there is also the effect of the Anastomosis and that probably is mostly to blame. For the first month I was immediately leaking into my pad in my briefs when I stood up, but I had more control by the two month point, and doing a Kegel from sitting or lying down, as I walked to the toilet, worked. Leaking did annoyingly happen sometimes during the day, as I walked around. It was particularly so when I was tired in the afternoon, or was lifting something. That mostly quit before 3 months. My understanding is that at least some lifting incontinence (they officially call it straining) may continue forever, but that did not happen, or hardly, with me ....just a rare occurrence now and then.I was 'counting pads' before I went to bed every night. I put out four every morning, and before bedtime I know how many I am using during the day; this was 1 or 2 around the 3 month point.
At about the one month point I had some morning dizziness for three days in a row that disappeared. Never figured out why. My suspicions are that it had nothing to do with the surgery.
Sometimes I felt up to going to the gym, sometimes not, but I tried to force myself to go even when I am not feeling like it. I look OK, but my stomach/waist is only fair. Where did that 6-pack go? The incision looks quite well healed. I am slowly getting back into shape. Very slowly.
I am doing Kegel's while standing & urinating, to try to have better muscular control ...and this is working. It is very important for someone who has had a prostate removed to do this. Mostly I try to urinate and do a strong holding Kegel, or two or three, releasing a bit of urine in-between Kegels. Mostly I urinate when I feel the need ...but, sometimes I will, on purpose, let urine accumulate, stretching the bladder some. Doing Kegel's only when sitting is not a good idea, and not nearly as effective in adding muscle control as when standing. That is not to say one should not do them sitting. The name of the game here is to strengthen that hidden internal muscle, at the bladder outlet. It is very important to not cut down on liquid intake. It is very helpful to increase liquid intake, by quite a bit. The more one urinates the better it is for your body in general ...but also for the advantage of more 'training' of that bladder muscle. Doing Kegel's even when sitting, perhaps at your computer, is a good idea. I am not sure one can overdo it.
By 6 months post-surgery my energy level had at times come back closer to normal, sometimes lasting a normal full day. My performance in the gym was still slowly improving. The pad usage was usually about 1 per 24 hours, sometimes a bit less, sometimes a bit more. Lifting weights at the gym or most anything heavy, or doing the stepping machine aerobics, sometimes caused a bit faster pad usage. After sitting for some time, upon standing, I previously leaked some into the pad, but that has not been the case for some time now. Bladder capacity is definitely increased. Erections are not much, just some ....to moderate ....lengthening and thickening. Orgasms are possible but they take a fair amount of stimulation. Certainly not the great ones I remember.
I started driving the sidecar rig some. I was also riding the solo motorcycle, but Winter was fast approaching. It was still quite hot in Palm Springs, where my shared condo is, and the air-conditioned car is best for me in that hot weather, which I don't handle at all well, never really did. My suspicions are that the doctor was right, a relatively full recovery takes 6 months. It turned out that even 6 months was to be optimistic. Recovery may be longer for someone who was not in as good physical condition as I was. I have talked to a lot of men since my surgery, and most do not have the problems I had, or, just had them much milder. This seems especially to be true as surgical techniques have improved.
The surgery of May 2003 weakened my abdominal wall. I'd always had a genetic tendency for problems, but never had to do anything. I had hernias develop on both sides, and they were getting severe. In November, 2003, I had double hernia repair surgery. This put a damper on my prostate surgery recovery ...well ...some ...but I recovered well by ~February 2004.
I had a PSA test at the end of December 2003, and the results were again at the lower limit of the machine, 0.10. I had another PSA in May 2004, a different laboratory, with a new high sensitivity machine ...and the PSA was 0.04.
My PSA generally remained low. I got a glowingly good both verbal and written reports from the doctor in 2005. I took a copy of the written report to my FAA flight doctor, and applied for reinstatement of my Commercial Flying privileges. The FAA doctor said I'd get an unrestricted Certificate, and, I did. I did have to supply PSA tests and doctor's reports to the FAA for every yearly Commercial Certificate renewal. That continued for 6 years, then the FAA stopped asking for it.
I have a bit less trouble with heat, as ventures into 95+ degree weather showed. Now I almost always get a natural erection of good stiff quality with manual (or mental) stimulation. Orgasm's are not the same, nor, sometimes, as long-lasting; my guess is that without the contractions of a prostate gland, that is the reason ...plus, perhaps, just getting older. Over-all, my health seems OK. Except for not having the energy of a 30 year-old, I am doing OK. I am in fairly good spirits, and I have a better outlook on life.
I still wear a Depends or other brand of Men's Pads, day-times. I don't like other brands quite as much, although the Guards from Longs (or CVS) are OK. Packages vary and there may be 48 or 52 or 72 pads in one package. I buy several packages when on sale. I have accepted the fact that I will never have 100% perfect control. Other men, in similar circumstances, have reported that they do get perfect, or near perfect control. Only a few percent never get any control to speak of. Summing-up, much of my incontinence is now gone, except slight if very tired or once in awhile at the gym or elsewhere's if lifting something ...this is as expected, but, once in awhile I leak just a tiny amount for no specific reason I identify. I use a new pad every day just to keep them from smelling ammonia-like. I usually do not wear one at night when sleeping, and almost never leak at night. I avoid having any alcohol before bedtime; it tends to make me leak. I have heard that very spicy foods for dinner can have a leaking effect, I never proved that for myself.
My physicians had previously mentioned the possible use of Viagra, Levitra, or similar, if needed (haven't needed them, might like to try them though ...heee heee). We men do tend to identify ourselves with our penises ...EH? As it turned out, my erection nerves, etc., work well now, even in my late seventies ...but, as with most men in their seventies, I need more stimulation for a good erection. Sometimes the amount of stimulation needed is very little.
Most men are having better results nowadays from most all types of prostate treatment, including surgery. They are having less complications and healing faster. This is especially so with the various laparoscopic methods. Things have improved since 2003. Keep in mind that large improvements in quality and effective treatment have been made since I had my surgery. You can almost for sure expect a much quicker recovery today. Improvements in drug treatment, radiation treatment, etc., are also true. Much quicker recovery is rather normal now.
With the continuing good PSA test results, I "assumed" that I was cured of the cancer (doctor's would likely officially use that word after 10 years of low PSA; for me, that meant May of 2013) ...but... some side effects of the surgery will be with me, always. Such is life. I am feeling pretty good although I tire more easily ...well, sooner in the day ... Age? But, my PSA started rising slowly, years after the surgery, so I may have to treat the situation, eventually. I may add more to this article about that rising, and any treatment, later in this article.
I cross-country ski and downhill ski and do 1 mile brisk walking and spend about an hour at the gym a few times per week. Occasionally I do a mild hike. I use my bicycle now and then. Exercise really does help me feel much better physically and it is also very good for my mental state too; but, I don't get enough. In late 2005 a close friend insisted I accompany him on a simply great vacation in June-July, to Norway, to do the Fjords, and visit Oslo and Bergen, the Fjords being done via a ferry ship; the Hurtigruten Company. I formally asked Penny to marry me upon my return, and she accepted and we married in 2006.
Further 'recovery' from the surgery of 2003 did not happen. I stayed about the same. One pad per day, less energy (more than just from aging, I thought, still think so). Was not as physically active as previously. Had no real problems with erections though it took more stimulation. I drove the sidecar rig to the Spokane MOA National Rally in 2004; and, to the Stevenson rally in 2005. Penny and I have done trips together, some lengthy. In the summer of 2008 we did a 5500+ mile trip on the Sidecar rig across the U.S. in a round-about routing to Duluth and back, taking in a lot of sight-seeing, two rallies, etc. ... 5 weeks. In 2009 Penny and I put on the USCA National Rally here at Lake Tahoe. We went to the MOA National in 2010 in Redmond, Oregon. I participated at the 2011 SuperTech in Boyertown, PA, and the 2013 Redmond, Oregon MOA National Rally. I do an occasional techday or tech weekend, an occasional seminar at a rally.
Ever since the surgeries of 2003 I have slowly made numerous small changes. I decided I was getting on in years, and it was time to work less. I reduced my repair business to a lower level in small steps. I stopped working on BMW bikes for others, and took life a little easier ...bit by bit.
A couple of years after my surgeries I had sold my sidecar rig (BMW R100RT with Ural hack) that I had so laboriously designed, constructed, etc. I wanted another, but one with more highway acceleration and cruising speed capabilities so I purchased an existing sidecar rig and modified it extensively. It was a K1100LT-EML-EZS rig, I still have it, still drive it. It is much better for long distance touring than my prior sidecar rig. I also had a solo motorcycle, a 1984 R100RT, and generally enjoyed life more, especially with having a wife I was deeply in love with ...after so many years of being a bachelor. Travel some; camp some; go to concerts; walk in the woods; cook together; go to dances (and even take dance classes!!); ski some. I was feeling and even looking pretty good for a guy in his seventies; all the plumbing worked too! ...not as good as when thirty, although OK.
I sold the 1984 R100RT. because I thought I shouldn't be riding a two-wheeler anymore; and, Penny never wanted to be on the back anyway. About a year later, in early 2015, I was going crazy without a two-wheeler (except my bicycle), and purchased a 1995 R100RT. Due to lack of energy, it took me over a year to do all the servicing and modifications, and I am quite happy with the motorcycle now. As I type this paragraph in late August 2017, I 100% finished that bike earlier this year, with the finishing touch being a major rebuild to the Day-Long seat ....as the previous owner (& original purchaser) was 6'7", had a 38" inseam, and I am hardly of that size ...and ...I had major problems swinging my leg over that tall seat, etc. I did what I hope is the final modification to the sidestand (I've tried several mods). I'm not yet putting on any major 2 wheel riding miles though, as other things in life seem to interfere, often.
My low energy level has continued, but is not constant. Some days I feel quite good. Just age, I think. I'm 80 as I type this.
Backtracking some; my PSA remained under 1.00, typically around 0.5 to 0.9 for a long time. It should be lower, like 0.04, the present, newer, machine limits of testing. My PSA rose a bit over time, reaching 1.5 in late 2013 ...partly because I was taking a small amount of testosterone. I took the testosterone only because my level was so very low it was affecting me with what I considered poor muscle tone, lack of libido, etc. Testosterone affects one's entire body ...the mind too. Taking testosterone is thought by many doctors to be playing with fire, if one has or has had PC. They may be correct. Some doctors think it was somewhat to plenty dangerous for me to be taking it. It was entirely my choice after consultations. I set a limit for myself, which was that if the PSA rose to 2, I would quit taking the drug. In January of 2014 it reached 1.98, and I quit taking any form of testosterone, and that remains so to this day.
My PSA is still slowly rising, with one slight retractions along the way. Various tests were done at the end of 2015 to 're-stage' my condition. These tests included PSA; whole body CT scan with barium sulfate by mouth & injected iodine contrast. Nothing was found. So, why the PSA not being zero? Probably some small cancer cell amounts scattered here and there, but are not growing fast, but faster as time goes on. My PSA is being watched carefully. It reached 2.34 in February of 2016; 3.32 in September 2016; 4.59 in December of 2016; 5.35 in March 2017; lowered slightly to 5.06 in June 2017. I am now having PSA testing and seeing my Urologist every 3 months. Total PSA is still low, and should be no metastasis to my bones at the present level. I suspect I will be on Lupron, which should reduce the PSA to near zero, late in 2017 (?)...and I expect that drug therapy to last up to 2 years. I don't like that idea, but it may be the only reasonable thing to do; and, if and when the Lupron starts to fail, and the PSA starts to rise again from 'castrate levels', then I might have other therapies available to me. Maybe.
I think there is a good chance that due to my age, that although my eyesight and reflexes are quite good, my muscles are shrinking, and it is harder for me to man-handle a 2-wheeler, so I may have to give up motorcycling, maybe before I am too far into my eighties. I may decide to retire totally, sell out at Lake Tahoe, and move to some sort of Continuing Care facility, where I am not responsible for home maintenance. I have no idea about the sidecar rig and motorcycle, might sell it. I would hugely miss puttering-around in my shop, etc. Time will tell.
Special note:I've been asked about this effect, and could never provide real data, just my own "I think" information ....until now:
Sorry for the tiny print, but it was copied as an image from a respected Journal, and this is information that was very difficult to find!
I have edited and combined these for clarity. Please read them, and then read to the end of the article.
The rate of increase of PSA has been mentioned by me in numerous places in this article as being very important. That importance seems to be constantly going up. The Pierpont Study was an example.
This particular paragraph is my interpretation, and my input here, from all I have read. As a general rule; if your PSA is rising in any one year, at the same testing lab, under the same conditions (no sex for a couple days or so, no DRE, etc.) ....at or below 0.7 or 0.8 per year, you may well not need a biopsy. Some Urologists use 0.5, and some 2.0. I personally think 2.0/year is not OK; but that depends on your age and life expectancy. Keep records! If your PSA suddenly really jumps, get re-tested. Rate (velocity) information may help men with prostate cancer. A 12 year study of about 1000 men included men from age 43 to 85, confirmed that when PSA levels increase less than 2.0 ng/ml per year, prostate deaths are very low. Only 0.3% of men with PSA increases below that velocity value died during the 12 years. Keep in mind, however, that if your life expectancy from the usual mortality tables is high, then you may want to delve deeper if your velocity is over maybe .8 per year. Research from large group studies shows that reducing the PSA testing/consideration threshold down to 2.6 ...'for further tests....such as biopsies' ...will greatly increase the PC detection rate, at little cost in additional false biopsies performed (perhaps from 2% to 6%, worst case). Because of this, I believe that not only must a PSA that is rising faster than normal be investigated further, but that any PSA above 2.6 should be considered for further investigation. Each man must decide for himself. Keep in mind that biopsies cost much more than a PSA test, and so HMO's and other health insurance folks (and the government!!) might well try to discourage biopsies. One must temper all this with one's age; since prostates enlarge normally with advancing age, thus PSA normally also increases.
My recommendation is to get PSA tests done regularly, from the same lab, and refrain from sex for a couple of days prior to the test (and no DRE immediately prior either), keep your own PSA chart, and if the PSA is over 2.6, it is time to think seriously about consulting a Urologist and to discuss whether or not to have biopsies done.
In an effort to reduce false positives; reduce costs; etc., some 'government folks', or those allied with insurance companies ...and quite a few other folks ...are more and more likely to recommend against even having PSA tests done. Interpret this as you wish.
Recent Studies are confirming, yet again, that diet & exercise are effective against getting prostate cancer, & also likely help after PC.
'Salvage radiation treatments' for those who already have had their prostate's removed and have had a rising PSA within a few to maybe 4 months after such surgery ...(here I am not speaking about short term PSA spiking soon after surgery), will usually stop the cancer or greatly slow it, and failure to do the radiation will allow the cancer to invade the body and probably will result in a shortened life. It is not unusual for a PSA spike after radiation; the PSA usually settles down.
No, I have not had any radiation treatments.
The following lengthy section is being added due to considerable amount of misinformation, half-truths, sound-bite type reporting, etc., in newspapers and on TV, and I expect this sort of thing to continue; especially since old information is available on the Internet. This deals with interpreting the article on prostate cancer and PSA testing, etc., that was in The New England Journal of Medicine, in May 2004, that still gets passed around. I will greatly condense that article's information here. As I pointed out much earlier in this lengthy article you are reading on this website, the PSA test, which is the best over-all test we have nowadays (besides repeated biopsies), previously had a doctor-accepted cutoff of 4.0. That is no longer true, but much needs to be said.
The Journal article points out:
15% of men with "normal" PSA had prostate cancer. High grade cancer was found in about 2.3% of them. Before you get upset, multiply 15% by 2.3%! ....the resulting % is very low. All the half truths and miss-reporting did not explain this at all! The lower the PSA, the lower the risk of cancer. There is no clear PSA level that guarantees no cancer. The problem then is obviously what to do when looking at your PSA level.
A summary was obtained from Dr. Ian Thompson, Chief of Urology at the University of Texas Health Science Center at San Antonio ...and who was the Lead Investigator in the above Journal research. A man in the U.S. has a 17% risk of being diagnosed with prostate cancer in his lifetime ....& a risk of dying from the disease of 3%. (note from Snowbum here: other reports show that there is a 11% chance of a man getting PC over his lifetime. This is not exactly the same thing as the 17% who are diagnosed). Think about those figures; and realize how figures are misused. Just on one level alone, there is a 6% difference between these figures ...and one could imagine the difference being due to false detections of cancer. One could also see that 97% of men will NOT die from prostate cancer, but from something else including old age, etc. ........OK, I admit to being a nerdy engineer-type! It is easy, and the media does it often, to use statistics for headlines ....without full explanations.
There is a risk, perhaps substantial, of having prostate cancer in what used to be called normal PSA. If a man has a PSA between 3.0 and 4.0, there is a 27% risk, if biopsy is used to determine yes or no; and, of those with cancer seen in biopsy, about 1/4th will have aggressive type of cancer; ...about a 7% risk of aggressive cancer in those with 3.0 PSA. The risk of aggressive cancer is only about 1% for PSA 1.0. Those with additional risk: African-American; older; family history of PC.
The results of this study may convince more men get biopsies, and more PSA tests. There is some concern; perhaps a lot, with the costs, unnecessary biopsies and treatments, etc. It is a trade-off. Biopsies do not always find the existing cancer ...which is why a second round is sometimes done ...and why 12 samples instead of 6 are often done. I do not agree with what the Government is trying to do about PSA testing.
There is research being done on better methods of screening and testing ...protein profiling, for instance ...and research into genetic and dietary risks and behavioral risks. I have nothing to add to that sentence, at this time.
Taking Proscar reduces the risk by 25%, but it might affect the ability to grade the PC, and might actually cause a more aggressive cancer ...all in the minority, but possible. No further information on this yet either.
Dietary changes are not 100% proven yet ...but ...there is a large growing body of evidence that diet has a large effect on all sorts of health items, and prostate problems are included. Do mpt take this information lightly. It seems like every few months more studies are completed that are saying diet and exercise are big factors in PC.
Two major studies were reported on in mid-2004. Thousands of men had been followed for years. The basic conclusion of just one part of these studies was that there is no PSA value below which a man can be assured that he has no risk of cancer. The research found prostate cancer in hundreds of men (this particular study involved 2850 men) whose PSA's were always under 4.0. 16% of the cancers were found in men who maintained PSA's below 1.0. This does not mean that they needed treatment ...read this carefully! Careful analysis of the latest research studies has confirmed things I have discussed much earlier in this article you are presently reading ...it is the rate (velocity) of PSA increase that is the most important sign of problems. Thus it is probably even more important than even previously thought, to start having PSA tests at a younger age, keep records of the values, and watch for value increases, and calculate the rate of increase as you age. Many types of prostate cancers are so slow-growing that they do not need to be even diagnosed, nor treated. For many, just waiting things out is the best course of action, but this is not so for all. If one has surgery or radiation for a very low-grade cancer, the adverse effects may well exceed any anticipated benefits. Many forms of cancers diagnosed in some types of cancer screening programs are indolent, nonlethal forms! ....that might otherwise not have been even diagnosed during one's lifetime.
But, suppose you do have biopsy tests. Here is the latest thinking. The following is for men aged 50 to 74:
|Gleason score||15 year risk of death|
|2 to 4||4-7%|
5 and 6 can be combined, and the result is 11-30%
What the above information means, put another way, is that if you are age 50-74, have prostate cancer, and your Gleason Score was 2 to 4, you have a rather low risk of death from it. If 5-6, you have minor risk, which will increase as you age. Many doctors now are convinced that so long as PSA tests rise slowly, there is no significant risk.
The second study was by V.D. Amico, etc., and was reported in the New England Journal of Medicine of July 8th, 2004. I will summarize the study here. The study was designed to identify men with prostate cancer who would probably fail to be cured through radical prostate surgery, but the study gave results far beyond the original concept. The main thing for you to know is that the rate (PSA velocity) of PSA increase ... is the critical thing to identify risk (coupled with normal life expectancy, etc.). Thus, without any biopsies at all, watching your PSA is confirmed as critical ...and the most critical thing is the rate of increase.
The study revealed, in an abstract by Kaplan-Meier, that the 10 year cancer-survival rate was 93% for those with PSA's doubling over 10 months or longer, and 58% with doubling less than 10 months.
If the rate of increase exceeds 2.0 in any one year, at any level ...the risk of PC is so high that a biopsy may uncover the disease long before it becomes incurable!!! Read this again!
1. At age 40-49, if your PSA is 0-2.5, your risk of having PC is ~18%.
2. At age 50+, (40+ for African Americans), if your PSA is 2.6-4.0, your risk is about the same 18%.
3. At the same ages shown in #2, above, if the PSA is 4.1-10, the risk is about 28% for PC.
4. At the same ages shown in #2, above, if the PSA is 10.1-20, the risk is about 70% for PC.
5. At the same ages shown in #2, above, if the PSA is over 20, the risk is at least 90% for PC.
6. The PSA velocity is all-important. You need 18 to 24 months of good PSA monitoring to get an idea of the velocity.
7. The DRE catches, at very best, ~60% of PC ...and the big problem with DRE, is that by the time DRE finds cancer, or a suspicion of it, it may well be too late for a cure.
I have tried to leave out of this entire article much of the complications and confusions over a test called "free PSA". Very basically, there are 5 types of PSA, 2 act one way, 3 act another way, in the bloodstream. One of the purposes of doing a "free PSA" test is to enable the doctor to decide if biopsies are a good idea. Here is a rule of thumb::: If it is below 24% and the regular PSA is between 4.0 & 10, then biopsies are likely to correctly find more than 90% of any existing cancer. Knowing these figures might help you avoid biopsy, but 90+ percent is not 100%.
In late 2005, a number of longer term studies were reported. It now appears that PSA, the substance, is perhaps responsible ...again, perhaps!! ....for PC. PSA is involved with inflammation, and it is now becoming a very distinct possibility that PSA is the trigger for PC. This is a fundamental difference ...in that previously it was thought that PSA reflected just levels of an antigen, and that higher levels meant that something was going on, perhaps cancer. It appears that the antigen's enzyme may be 'digesting' some cellular tissues, and helping to speed up the spread of malignant cells ...to other body areas! I will add to this when I have good information.
More and more studies are backing up previous work, and seem to prove that if the PSA increases at less than 2.0 per year, the chance of death is very small, perhaps in a group, 0.3%. If over 2 per year, it raises to 9.0%.
Some information on habits ...diet ...and ...dietary supplements:
This is not as controversial as you might think. Certain habits and things in your diet will definately increase your risk of PC, and many other cancers. Confirmed is a connection between tobacco smoking; broiled red meat well-done or charred until the fat changes (partly to a carcinogen!) (this is especially so for grilled meats). There are concerns about cured meats (nitrates, nitrites ...see the labels).
Bad things: trans-fats ...including hydrogenated fats (strong connection with cancer, but not with Prostate Cancer ...so far). Try to avoid these fats, read labels.
Nuts, in moderation, are helpful, as are whole grains (including Quinoa) and fish. Omega-3 is good. Other good things are fruit, vegetables, lentils & beans. The main reason all these things are good, is due to their anti-inflammatory action. There is a lot of evidence that inflammation is an early situation that can lead to cancer. There is more and more of this evidence every passing year. It appears that the cruciferous vegetables; and Brussels Sprouts and Broccoli, do have protective chemicals, that probably help prevent PC. Over-all, reducing grilled meats (outdoors, fat dripping, high heat.....), keeping weight down, getting exercise, avoiding animal fats, and eating better, all seem to lead to far fewer cases of PC.
I am not in favor of large amounts of any type of supplements. I eliminated an entire long section on them in this article, after some serious studies with a large number of men, proved that only a few things were of advantage, such as eating tomatoes with some olive oil. Selenium and some other supplements have been shown to be bad for you, unless you live in an area where such trace-elements are extremely low.
Probably the best dietary advice I can offer is to eat tomatoes with a bit of olive oil (for proper absorption by the body), eat cruciferous vegetables, eat more fruit, eat things with dietary fiber in them, avoid sugars, avoid artificial sugars, take one-half of a common vitamin-mineral supplement pill once a day. Try really hard to cut down on hydrogenated fats; try similarly to cut down on smoked and cured meats and high heat grilling. Wash fruits and vegetables before eating, unless you grew them without using pesticides.
Insurance companies; and, being pro-active:
Doctor's must deal with insurance companies. For most doctor's this is a major expense even with a small practice. This results in having at least one office person just to deal with insurance ...which increases medical bills, which you pay, one way or another. One result is that there may be various charges for initial consultations, and other things on bills ....and ....doctor's subsequently may spend only a few minutes with each patient. Few doctors have the time to really read & absorb much of the information that is published. Those doctor's who do keep up 'with the literature', and will answer your questions, .....and who have a lot of experience; ....are, generally, the type of Doctor you want!
As a patient, or potential patient, you, must take a pro-active role. Be sure to ask questions, study literature, and don't be passive. If you need treatment, discuss it. Ask lots of questions. If the doctor wants to treat you, ask why, specifically and in detail. If your doctor won't answer questions, is too rushed, does not want to work with you, etc. ....you likely have the choice of keeping that doctor, ....or looking for another.
1. PC is found in 10% of men when the PSA is 1ng/mL or under; and about 12% when under 2.0; 15-25% when it is 2-4 ng/ML. Thus, there is no way to fully ensure you do not have PC, even with a very low PSA ...but that test is possibly the best we have right now. You could look into the EPCA-2 test. Do a search on the Internet.
Also, try: http://www.harvardprostateknowledge.org/moving-beyond-psa That article has been inspected by its author more than once over the years to be sure it is still pertinent.
2. One of the things some knowledgeable folks use to analyze PSA, is to think in various ways about the velocity of its change, that I have so emphasized in this article. There is a Golden Rule for this. If the PSA doubling time is less than 12 years, there is likely some sort of tumor growth, PC is probably evident. Other factors will determine if anything should be done. In particular, if the PSA is under 4, then small increases per year need watching and maybe diagnosis.
3. If the PSA is between 4 and 10, you probably do not need a biopsy, if the Free PSA test shows over 25%. For PSA (not the Free PSA) values over 10 it makes no sense to get a Free PSA test, as you do need a biopsy with regular PSA over 10; and, speaking of biopsies ...six core tests is NOT enough ...10 or 12 is needed, otherwise you are wasting money, time, and may well be missing out on a thorough testing, that could cause problems later on. Some doctors don't use a biopsy gun, but a biopsy guide ...I think that brings more complications.
4. Intraepithelial Neoplasia (PIN) is reported frequently, maybe 10% of the time, in pathology of the prostate biopsy tissues. I suggest you do not let your doctor talk you into a repeat biopsy for just that. To avoid unneeded biopsies when your PSA is below 10, and especially if 4 to 10, insist on a Free/Total test ...if over 25% or so, you can probably reject a repeat biopsy.
5. A Gleason Score of 8 or more needs solid aggressive therapy, right away. Do not trust the results of the pathologist ...get a second opinion of the samples ...chances of a wrong Gleason Scoring are about 20%.
6. If the pathology report comes back as "atypical-suspicious" ...have the specimens sent to another pathologist. If the second opinion is the same, then schedule a repeat biopsy.
7. Except in rare instances, PC grows very slowly, it is not a medical crisis ...don't rush to judgment on what to do. Think things through in depth.
8. Some companies are hard at work trying to develop gene tests for prostate cancer. The most promising seems to be tests, already available by early 2013, that can predict, rather accurately, the likelihood that your cancer is the aggressive fast-growing type (which means more immediate treatment), versus the slow-growing type, that might remove you from any sort of treatment that is invasive, and I am including surgery & radiation & drugs here. You should check with your Urologist. I will update this article when there is enough data and 'proof'. As of early 2013, the two tests available are quite costly .... $$$$.
9. Many things are seen on TV, magazines, etc. and you usually have no idea of what is behind these bits of 'news'. Few tests and treatments (and certainly 'supplements') end up being worthwhile. Now and then I find out about something that does seem to have great promise. One such was some experimental testing for what is called EPCA-2. I will have more to say about this test in the future. If it ends up being even half as good as it seems, it will augment the PSA test, and may well show real improvement in diagnosing PC, probably much much earlier than possible before. I certainly hope that the test proves to be a good one, as the PSA test, as you have seen, is what we have, but it is not at all foolproof. See the link in item 1., above.
This next major section is a quite lengthy one, divided into several sub-sections. It describes various surgical treatments, various radiation treatments, drug treatments, etc. for prostate cancer.
Choose your surgeon and your hospital very carefully. The cancer recurrence rate for surgeons who have done at least 250 prostate surgeries is vastly less than for surgeons who have done only a dozen or so. PC tends to recur in one of 14 men who were treated by a surgeon with low experience. Hospitals with low numbers of prostate cancer surgeries will also have higher recurrence rates. Overall, in the USA, 55% of men having surgery will not recover erections, and surgery fails in 25%. So, pick your surgeon and hospital carefully. Notice how these official recurrence figures of 1 in 14, can seem to conflict with earlier statements about near 50% success ...failure ...recurrence radiation rates, earlier in this article. See how figures can seemingly say anything? Read between the lines! Understand what is being said and meant and ask questions!!!
Laparoscopic surgery and Robotics Laparoscopic Surgery ("minimally invasive surgery"):
***Arthroscopic is similarly the same sort of surgery, but doctors use laparoscopic when talking about the abdomen. ***
A report was released in October, 2009, in JAMA, of a large research project which was done by Harvard researchers, on a fairly large number of men who all were 65 or older. This project specifically compared minimally invasive surgery to open surgery, for prostate removal. The minimally invasive techniques were a bit better when comparing problems such as pneumonia.....but poorer for impotence and incontinence ...by just about a doubling! Hospital stays were shorter for minimally invasive techniques. The rates for cancer control were similar. It is my belief that the laparoscopic method (including robotic) is improving at a goodly rate, and will continue to do so, and may become, more or less, the standard, eventually.
Robot assisted laparoscopic surgery has become widespread. The machines cost a hospital about 1-1/2 million dollars, and they often end up pushing this type of surgery. I am still a bit cynical about it, and think that hospitals are trying to recoup the money they spent for the equipment, more than it having any substantial advantages (except, as noted). Robot assisted surgery does have some advantages, such as less blood loss and less recovery time; ...but, as of September 2008, robot surgery success rates were not as good as traditional surgery in many areas; and, the robotic surgery operating time is nearly twice that for conventional surgery ...perhaps upwards of 5 hours. I simply cannot, in good faith, absolutely recommend robotic surgery over conventional, although conventional laparoscopic seems good. Note however, that your surgeon, doing conventional surgery, may take longer than 2-1/2 hours for your surgery. Ask! Some robotic surgeries become struggles ...and can last 7 hours. Ask! Long operating room times are not very good for you! ...compared to shorter times for open surgery. On the other hand, a surgeon with a great track record on whatever method he uses, is more to be trusted. Your surgeon's success rate may be much higher than others! ...a really good surgeon can do laparoscopic robot assisted surgery with surprisingly excellent outcomes ...fast healing, less pain, fewer problems. Every summary and report I have seen made me think that some robotic surgery is not any better, over-all, than conventional surgery.....but:
Things have begun to change. One of these changes was in a conclusion of studies reported in 2010 ...this is only 2 years after the information in the prior paragraph. The conclusion was that robot-assisted laparoscopic surgery was better than non-robot ...again, this is for laparoscopic comparisons.
Da Vinci Laparoscopic surgery adds computer tech to help a surgeons hand and finger movements into surgical actions. The surgeon may not even be in the operating room. I can't recommend this type of surgery if you are especially worried about the chance of permanently losing ability to have natural erections. For this type of surgery, you should have small tumors, PSA's under 10, Gleason's of 7 or under, and a normal DRE. See above on robot assisted surgery. However, my recommendations aside, many surgeons are having excellent results with Da Vinci.
If you want to read a very technical report:
Here is a short abbreviated report, released in 2016:
Another large scale study was completed in 2010. Nearly 800 men with early stage prostate cancer were the only types in this study. Early Stage here means that the cancer had not escaped the prostate gland. Different treatments were compared. No studies, none! ...proved that there were lower risks of long term incontinence, nor impotence, with robot surgery. This study also compared short, medium, and longer term outcomes for various types of treatments, including Radioactive Seeds. It was found that the seeds were best for quality of life, as reported by the patients; with Cryosurgery the second best for this. Quality of life included such as erection ability; and, in particular, incontinence ...for the short to slightly longer term. But, at 3 years or more, problems with sexual function were higher.
3D-CRT means 3-Dimensional Conformal Radiation Therapy, and it works better as the radiation is increased ...up to a point.
The amount of radiation given used to be in RADS. Now, a more detailed way of measuring radiation is used, specified in GRAY's (Gy's). One Gray is the absorption of 1 Joule of energy in the form of ionizing radiation, by 1 kilogram of matter. If you already understand Rad's, and want to relate Rad's and Gy's: 100 Rads is 1 Gy. I suggest you forget all this stuff ...well, maybe.
Here is some information that might be more pertinent for you, if you have had or are getting radiation.
For the best results, Sloan Kettering's Dr. Scardino has studies for the following radiation levels.
64.5 Gy: About half the men had cancer 2 or 3 years later.
70 Gy: About 1/3 of the irradiated men had a positive biopsy later.
81 Gy: Less than 10% tested positive for prostate cancer after radiation.
Dr. Scardino says that 70 Gy is too small a dose for any patient with a Gleason Sum of 7 or more.
Upwards of 91 Gy is being used with Proton therapy, and results, so far, seem to, maybe, indicate a better result.
Clinical stage of prostate cancer and your Gleason Score has a big effect on how radiation will work ...or will not work well. If you have Staging of T1C to 2a, and your Gleason Score was 6 or under, 90% might expect to be cancer-free after 5 years. This drops to 81% for T2b and Gleason 7; and 60% for T2c and Gleason 8 or more.
IMRT: Intensity-Modulated Radiation Therapy. Can be very effective, and can allow up to 91 Gy, whilst still holding the side-effects to a minimum ...and so that can increase cure rates. IMRT is probably today's best radiation treatment. It is also very expensive and requires a lot of expertise.
It was unclear, at the end of 2008, that even 91 Gy of Proton will be better at preventing recurrence of PC. I last updated this section in Oct. 2016, and evidence was piling up. However, keep in mind that there is, so far, no careful clinical testing to actually compare results. We won't know for some time yet ....but there surely is 'some anecdotal & other evidence' that Proton will be, even at its higher cost, more effective and less damaging, than IMRT.
A registered trademark that has nothing to do with surgery by knife. It uses a robot and computer controlled system to deliver radiation. I suggest you do your own research on the Internet.
This is the implantation of radioactive 'seeds' ...typically 50 to 150 ...of Iodine 125 or Palladium. The radiation lasts differently between these two types, and the seeds remain in the prostate gland. Due to radiation emitted from the seeds being described as by half-life ...which is for each succeeding half life ...that is, each half life period has half the radiation of the prior one, and the difficulty in my being able to describe the technical aspects in a way you can understand it easily, I have not attempted to do so here. What I WILL say is that the treatment can be effective. Experts in this field recommend limiting the use of Brachytherapy to men who:
Have a Gleason of 6 or less.
Stage T1 or T2a
PSA of less than 10.
Brachytherapy and beam radiation should not be used together.
Brachytherapy may not work well unless done by quite competent experts.
This is high intensity focused ultrasound, HIFU, which delivers cell-killing heat to the prostate. I don't have enough good information to discuss this.
This is a freezing, thawing, refreezing. I can't recommend this if you expect, or desire, to have your erection nerves be left undamaged.
The normal use of hormone therapy is to prolong life and reduce pain, when the cancer is advanced and has spread out of the prostate gland (metastatic), and this means after other treatments have failed. In some instances, especially where radiation treatment has been done and the cancer did not show that it escaped from the prostate, hormones are used. This is particularly so if the PSA was very high. Of course, if cancer is found spread into areas of the body, there may be no 'other' treatments done first. Undesirable side-effects are fairly normal with hormone therapy. Hormone therapy is also used to shrink the prostate prior to radiation (IMO, it is not a good idea to use it prior to surgery).
Hormone therapy has been used by some doctors to treat early stage PC. Not recommended, but read on. This therapy is androgen-deprivation therapy ...often just called 'hormone therapy'. If your cancer is early stage, and localized, yes, this treatment will have a big effect on your PSA, but it probably will do nothing about prolonging your life, and may be very harmful ...and some think it can lead to an early death. You can expect hot flashes, weight gain, loss of 'smarts' (declining mental abilities); it can make diabetes worse, and may trigger heart attacks. A lot of men are on hormones when, in my, and other's opinions, they should not be. The evidence against using hormone therapy for early stage PC is overwhelming. There are exceptions. Specific exceptions have been recently published by Dr. Michael Nuslund of the University of Maryland School of Medicine: a limited number of older patients with highly aggressive cancer cells, that are on the verge of spreading.
In 2010 a large scale study was completed and the results were announced. Nearly 800 men with early stage prostate cancer were the only types in this study. Early Stage here means that the cancer had not escaped the prostate gland. Different treatments were compared. NO studies, NONE! ...proved there were lower risks of long term incontinence, nor impotence, with robot surgery.
This study also compared short, medium, and longer term outcomes for various types of treatments, including Radioactive Seeds. It was found that the seeds were best for Quality of Life (as reported by the patients); with Cryosurgery the second best. Quality of life here included such as erection ability; and, in particular, incontinence ...for the short to slightly longer term. BUT, at 3 years or more, problems with sexual function were higher.
Although not having anything to do with PC treatment, I have been asked about other types of treatment for the prostate gland, one in particular, which is surgery for an enlarged prostate. I don't have the needed learning in this area, so will make only one mention at this time. One of the standard treatments is called TURP.
The newer Bipolar TURP works well in some Urologist's opinions. At the present, I can only offer the below link, with the understanding that you should read some of the citations at the bottom of that link.
Newer treatments for PC (especially advanced PC):
I purposely kept this section dealing with advanced prostate cancer to a reasonably small size. Advanced means here that the cancer has spread outside the prostate gland capsule. I may reconsider this minimum policy later-on. I do have very detailed information on the latest Guidelines, including what was released near the end of 2014 for treatment for those whose tumors have & have not yet grown resistant to hormonal therapies. The very detailed Guidelines come from a joint agreement by the American Society of Clinical Oncology (ASCO) and the Cancer Care Ontario (CCO) in Canada. These new Guidelines are very specific, and the two teams took into account Quality of Life; how men under the various treatments will feel; cost; etc. It names drugs, names treatments, names what to avoid, etc. I also have very recent information available. Below information as of early 2013.
1. Abiraterone (Zytiga). Most hormone therapy stops your testicles from producing androgens. However, other tissues, including prostate cancer cells themselves, can also make small amounts of testosterone. This drug, which comes as a tablet and is also taken with prednisone, stops other cells from producing cancer-fueling hormones by blocking an enzyme called CYP17. It seems to shrink large dangerous prostate cancer tumors in a high percentage of cases. This drug is taken by mouth, and seems to have many advantages over anti-testosterone hormone therapy. It has been shown to do more than just shrink prostate cancer, and it is a very promising new drug. So far, primarily for advanced prostate cancer patients who are no longer getting improvement in PSA from using anti-testosterone drugs.
There is also a drug called Enzalutamide for approximately the same purpose, which has promise to extent life considerably.
There is another drug, previously called MDV3000, now released as Xtandi, that is a new type of anti-testosterone drug. This one works on the cancer cells themselves. It has good promise to extend life in advanced PC.
The above drugs are also being tested in patients where the cancer is not advanced.
2. Cabazitaxel (Jevtana). Primarily for advanced castration-resistant PC. In many cases, prostate cancer cells pump out anti-cancer drugs before they can be effective. Cabazitaxel seems to sneak past these defenses. It's given as an infusion, which means a doctor or nurse injects this medication into your vein, usually for an hour every three weeks. You'll take a steroid called prednisone at the same time. Prednisone helps treat your cancer symptoms by replacing other hormones your body normally produces naturally.
3. Provenge (Sipuleucel-T). Provenge works with the cancer patient's own immune system. This injection is actually a vaccine. Unlike other vaccines, which prevent a disease, it treats prostate cancer. Sipuleucel-T works by stimulating your immune system to attack and kill cancer cells. For advanced PC.
In clinical trials, all these treatments helped men with castration-resistant prostate cancer live longer & better lives. Several other new therapies are showing promise and will likely be available soon. I have the Guidelines, mentioned above, for end of 2014, which are detailed.
Over time, doctors hope new research will help them determine which treatment will work best for which patient. Cancer therapy can then be more effective for each individual.
4. Xofigo, or radium-223 (formerly known as Alpharadin) not only extends survival for men with advanced metastatic prostate cancer, but allows men to have improved quality of life during that time; with fewer complications. Research is ongoing, but every summary I have seen shows this drug worthwhile.
5. As of late January, 2016:
New tests that may prove to be better than the PSA test are undergoing clinical trials and comparisons in several countries. The most promising may be released by 2015 if things go well. Those two sentences now need modification, since testing and trials summaries were made available in late 2013, due to the very improved results. Since I wrote that, some new studies have been very encouraging; the one below is from 2012, but pertinent.
Here is later information:
There is a new "urine" test for prostate cancer, called MiPS (Mi-Prostate Score). The work on this test, which is actually a panel or combination of tests, was done by the University of Michigan's Department of Pathology Mlabs. It is available to your doctor now. Read carefully. What this panel of tests, under this MiPS name does, is to improve the ability for your doctor to determine if tumors are high risk or low risk. This can greatly help avoid un-necessary biopsies. The test includes blood PSA, and two molecular RNA markers, which are specific for PC. What is quite interesting is that this test also includes the Progensa PCA3 type of test. I hope that the results of the use of the MiPS, over the next several years, works out as well as early summaries show.
Clarifications, some newer things ....and some comments:
1. For those that have what is called Aggressive Prostate Cancer, some fairly good scale clinical studies seem to indicate that radical prostatectomy leads to considerably longer survival rates than radiation or androgen deprivation therapies ...or combining both. It may eventually be that drugs under development will reduce or eliminate prostatectomies.
2. Some companies are hard at work trying to develop gene tests for prostate cancer. The most promising seems to be tests, already available, that can predict rather accurately that your cancer is, or is not, the aggressive fast-growing type (which means more immediate treatment), versus the slow-growing type, that might eliminate you from any sort of treatment that is invasive, and I am including surgery, radiation, & drugs. You should check with your Urologist. I am not sure of the costs, they were $$$$ only a few years ago.
3. This is not a test, but some information on foods, that have now been confirmed in several well-done studies. It is now overwhelmingly proven that trans-fats are dangerous to your health, at any time. It is proven that unsaturated fats and whole grains are by far better than saturated fats and processed grains. Every one of the researchers is recommending a zero use. It behooves you to read the ingredients lists on the food products you purchase!
4. Many men take Omega-3 capsules every day. This may not be a good idea. It appears that a capsule or two or even three every week may be OK, but if made from fish, be cautious. If made from vegetable oils or flax, daily use is probably OK.
5. One of the studies that was quite well done was to try to see if inflammation in the body was a prime cause for cancer, particularly PC. There seems to be a very strong connection. Researchers are now adding modest amounts of nuts and a small amount of vegetable-based salad dressing oils to the list of helpful foods (see mentions at various places in this entire article you are reading). It also appears that excessive inflammation leads to the highest grades of PC.
6. There is a evidence that if you regularly take Advil, Motrin IB, Aleve, or the generic, ibuprofen, that you are likely going to have twice the problem in achieving erections, than men who do not take these over the counter drugs. For those of you who have had treatment, either radiation, or surgery, for prostate cancer, avoid regular use of these drugs if and when you can. Keep in mind previous information in this article, that, after radiation, erection problems might show up much later, while with surgery it is usually immediate, but may well improve with time.
7. I have been asked numerous times about Kegel exercises, mentioned in depth in the main body of this article. The latest research and studies are reporting that 95% of men who do these exercises regularly after prostate surgery were able to eliminate urinary incontinence. I have looked into these 95% claims, and I was not convinced of that very high percentage, due to how the tabulating was done; at least up until ~2009 or so. I thought that the research conclusions should be 'greatly improved, but not eliminated'. Even before the improved treatments since 2009, my thinking, strongly, was that Kegels help almost 100% of men reduce incontinence, and that eliminating it absolutely entirely was a different story ...depending on the surgeon's talents, your physical condition and age, etc. I was and am convinced that Kegels are a huge help for all prostatectomy patients. My thinking has changed slightly, probably due to the reports and summaries showing better results from various treatments, including surgery and radiation, since that time. I think Kegels are very useful for all men having treatments of various types, but are probably not as absolutely required with surgery, as it was before ~2009. I think a higher % of surgeries these days leads to no or less incontinence. That does not mean that Kegel exercises are no longer valuable ...because they are.
Do NOT hold your breath while doing Kegel's (I failed to properly note that earlier). Do both types of exercises, short squeezes lasting 2 seconds; & longer ones lasting 5 to 10 seconds. These are not as easy to do when not holding your breath, but are more effective.
8. You may be confused by various reported 'studies'; government statements; & various other things, about whether to even have your PSA checked ...and, if it is high, should you have biopsies, & if cancerous, treatments. I cannot, and do not want to give definitive advice in this area; but, I will give you some thoughts. If your PSA is checked & is high, or you have had biopsies & cancer is found, & and you are nearing the lifespan typical for your family & close relatives, you may well want to do nothing. This is particularly so if you are frail & old. If you are in good health, reasonably young, it is not so easy to decide what to do. I'd be inclined to have surgery of some sort if the cancer was aggressive (with high Gleason score, after biopsies) & a lot was found in the prostate gland. If you were, perhaps, in your seventies, & your PSA was tested as high (one can argue about whether or not someone in their seventies and later should even have their PSA tested), & most of your relatives died before 90, you might well just stop PSA testing, not have biopsies, & plan for a reasonably long life, because the chances are pretty good you will die of something else, and not prostate cancer. If you were in your forties or fifties, or sixties, my advice would be to get tested, yearly, & keep your own records. The Government cites several studies saying that regular PSA tests, ...& in some instances implies any PSA testing ...is a waste (of time, money, and??). You must make your own decision. I am a believer in having testing done regularly, both PSA and DRE. I am a believer in being careful about interpreting results. It is my strong belief that in the present situation of available testing & treatments, that you should keep records yourself, and keep track of PSA velocity.
9. There may now be an on-line group, allied with major research centers, for those who have low-grade prostate cancer; and for who watchful waiting or other minimal testing or treatment is proper. Npsn.net is now part of the Prostate Foundation so you probably will find the information on the Prostate Foundation website.
Ask your doctor:
Note that this is a very detailed list.
Here is a suggested list of things to know ...and some to ask your doctor. This list comes from the Chief of the American College of Surgeons, is rather extensive and detailed, but has not been undated in some time:1. NO questions should be off the table.
Contacting those who have 'been there, done that'....ETC:
I do not, & will not, provide information, a list, or any other information, personal information, etc., of any type, to anyone; having to do with my conversations or other communications, with anyone. It is entirely up to you to contact others, perhaps a Support Group of some sort. I make no recommendations.
Surgeons, Doctors, Urologists, Radiologists, etc.:
I do no recommending. I suggest you do your research carefully. Choose wisely! You can also contact your State agencies or medical boards, etc, for information on a doctor's status, and problems; many States have such information available on Websites.
This was a screen shot of a communications to me from the Prostate Cancer Foundation, which I received on June 1, 2012.
The pertinence of it is self-explanatory. Underlining is my doing. New and advanced PC tests are available, since 2013, that test urine, that are vastly more informative. The primary test I think the best, in that regards, is called the MiPS, which I detailed, well above in this article. Meanwhile, the plain PSA test, for a variety of reasons, is becoming a political football. Awful!
|On May 21st, the United States Preventative Services Task Force (USPSTF) issued its final recommendation against PSA-based screening for prostate cancer with a "D" grade for "do not recommend." The conclusion that "few, if any" men, benefit as a result of prostate cancer screening....in the words of the Task Force....has been a point of contention with experts weighing in on both sides of the debate. However, the single best word I have seen to sum up the issue was provided by one of our own PCF Board members, Peter Grauer, in a recent e-mail exchange....the word is "reckless." The USPSTF report has caused more confusion than clarity about PSA screening; here are the facts:
Experts such as Patrick Walsh have said that the USPSTF did men a great disservice by overplaying the threat and side effects of over-treatment and underplaying the benefits of early diagnosis; the USPSTF also discounted a reputable European study that argues in favor of PSA screening. The PSA test is imperfect but not flawed....it is not a cancer specific test, but one step in the diagnostic process; it remains a very useful tool for caring for men with prostate cancer. According to Lancet Oncology, the prestigious medical journal, compared to a country where PSA screening is less common, 92 percent of American men with prostate cancer survive for at least five years, compared to 51 percent of Britons.The discussion needs to separate diagnosis from treatment.
By 2017, it was becoming clear to me that advances in detection, new treatments, and the oncoming "new science" were such that I needed to do a lot more research, and very often, just to keep this article up-to-date regarding every detail. I began to think this over in some depth. My conclusion was made in January 2018. It was that small changes to my article were relatively unimportant; and, that the article needed only to have a go-through approximately yearly (which I will continue to do); ...all... PROVIDED that ONE particular publication (that is updated and re-issued yearly), was going to always be available for free download (& printing) from the internet. That one publication is the Patient Guide, from the Prostate Cancer Foundation:
1250 Fourth St, Santa Monica, CA 90401
Phone: ( 310) 570-4700 (800)757-2873
Rather than put a copy of that publication into this website every year, I decided that I WANT YOU TO GO TO THEIR WEBSITE AND DOWNLOAD AND READ THE LATEST VERSION. It starts off simple, but is chock-full of details. Note that the latest version is not always on their site in January of any year, but if you join the pcf (no charge to join), they will put you on their mailing list, and send you a message about reading and downloading the very latest when it becomes available; your mailings will include bulletins during the year.
References/Resources (the resource in the above prior paragraph is probably enough for you):
I now and then check these below references/resources to see if they are, or remain, good ones; or that the links are still working. They are listed here to give you easy access to others' viewpoints, ideas, resources. The last time these links were looked-at, updated, etc., was: 09/22/2017.
Of all the links provided, you should first read the following article, every page. It is quite comprehensive, has the latest figures, is easy to read, and discusses every type of therapy, treatment (and non-treatment), drugs, methods, etc. IT IS VERY GOOD.
Everything below here is not reviewed often by me:
The book: The Prostate; subtitled "A Guide for Men and the Women who Love Them". By Patrick C. Walsh. This thick paperback book, with its not so promising title, is actually likely the best single book, over-all, many years ago, that I read. It was available in a 1997 paperback, and covered most everything you might need to initially know, besides what I have put in this website article, in dealing with the Prostate. I extensively annotated my copy. It may have been updated, ask the bookstore; or, check on-line. If there is no updated version dated within the last several years, then you may want to buy it for old information, much of which is still reasonably useful.
http://malecare.org/ Other folks PC, social, talk, some informationhttp://www.prostate-online.org Education, information; English and Spanish
http://www.PSA-RISING.com Useful information on a variety of prostate cancer things, including trials.
http://copingmag.com/cwc/index.php/cancerType/prostate/ Some information may be of considerable value to you.
https://www.harvardprostateknowledge.org/ Harvard Medical School, Prostate Knowledge. Solid website!
https://medlineplus.gov/ National Institutes of Health government site; of National Library of Medicine. Solid information.
https://www.cancer.org/ American Cancer Society
www.paactusa.org Patient Advocates for Advanced Cancer Treatments, Inc.
http://pcri.org/ Prostate Cancer Research Institute
www.ustoo.org US TOO International Prostate Cancer Education & Support Network
https://zerocancer.org/ ZERO, the project to end prostate cancer
https://www.usoncology.com/patients/practices/radiotherapy-clinics-georgia/ Information on mostly radiological approaches, but not entirely.
www.urologyhealth.org American Urological Association, Urology care foundation
https://www.cancer.gov/about-cancer/treatment/clinical-trials Clinical Trials, National Cancer Institute
http://drcatalona.com/ Dr. William Catalona's site. He's been involved with PC treatment for a very long time. You will find him mentioned in many articles on the internet.
You may contact the author, Robert Fleischer, aka snowbum, at:
http://bmwmotorcycletech.info/emailimage.htm for my E-mail address; or; by snail mail, at:
2601 Alma Ave.
South Lake Tahoe, California,
© copyright, 2004, 2008, 2012, 2014, 2017, 2018, R. Fleischer
Last check/edit: Wednesday, January 24, 2018