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I am always somewhat bemused by statements like yours …..that currently no one can tell you whether your prostate cancer will be latent or aggressive. That is true, if you are referring to certainty. But then no one can tell you with any certainty if you will have a heart failure, or if you will contract cystic fibrosis or even if you will have an accident in your car. There is no certainty in any aspect of our lives, so why do we expect it in the prostate cancer arena? Possibly a hangover from or belief, prior to diagnosis that the medical profession actually had answers to all diseases and diagnoses – that the term idiopathic cause (i.e. we don’t know what causes this) did not exist?
I also think that saying the determination “….the aggressiveness of your cancer it is literally a crap shoot.” does not reflect the reality of the diagnostic process, if my understanding of the term 'crap shoot' is correct. Being neither a gambler nor an American English speaker, I have always assumed that the term means absolute chance. This seems to be confirmed by the Urban Dictionary (which claims to represent modern meanings ofwords) which defines crap shoot as “…. a view of the future, seeing it as variable and dynamic, and totally unforeseeable. Besides the fact that it is slightly more black than the present.
As I say, aggressiveness or indolence of a prostate cancer variant can never be established with any absolute certainty, especially as it appears that the physiological structure of each man may affect this outcome. But, by applying a number of available tests and scans, a view can be developed which makes the odds of establishing the variant of the tumour somewhat better than the random outcome of a crap shoot, in my opinion. Some of the vaiable methods focussing on aggression/indolence are never used; some are used when not necessary.
I cannot comment on your particular circumstances, Bob, but what little evidence you mention would seem to relate to a genetic predisposition to an aggressive form of the disease. PSA can have a limited value in very aggressive variants because the most aggressive generate very little PSA initially. For example the study Prevalence of Prostate Cancer among Men with a Prostate-Specific Antigen Level ≤4.0 ng per Milliliter identified 67 men (15%) who had Gleason Scores between 7 and 9 although they never had a PSA higher than 4.0 ng/ml. Despite the fact that the individual cells in these variants produce small amounts of PSA, because they multiply so rapidly, the sheer volume of cells ultimately generates the high PSA numbers, which double and redouble in very short times. This can happen in less than 12 months, so that a man can have a PSA of less than 4.00 at one annual examination and a very high PSA in the hundreds or thousands at the next if he is unfortunate enough to acquire the most aggressive form of the disease.
I'm not ttacking PSA testing - there is a place for the test, wisely used, in diagnosis and tracking efficacy of treatment, but it is also importance to recognise the limitations of the test.
You wrote that you are not tracking PSA. Recently you wrote, if I remember correctly, that you would not have a PSA test for six months. Can you clear that up?
Oops! Jack you caught me with a typo - that'll teach me (again) to be more careful when I am heat affected and my brain goes soggy. It seems you have read the start of this sentence:
I'm not ttacking PSA testing.... as I'm not tRacking PSA testing... where I meant to say I'm not Attacking PSA testing... just to clarify the point before someone accused me of that heinous crime.
To clarify my position, here is the relevant extract from my Experience Story:
Anyone who has read my story will know that my natural inclination is to try to calculate the odds and if the glass is half full, or even MAY be half full or even have a fair drink in it, I'd rather take that option. So I decided to stop all medication, let the effects trickle out of my system and then, perhaps in January 2014, have another bone scan and a PSA to see what if anything they could tell me.
Dr Lim didn't entirely agree with this approach and although he has been very good in discussing everything very thoroughly, he jibed at the 12 month delay in testing. I found it somewhat amusing that his main concern was that he didn't want to see me with widespread metastases in my proposed time span. I asked him if he had any experience of such a rapid advance in a diagnosis with a Gleason Score of 6 or even 7a? And he had the good grace to admit that he hadn't, but was still uneasy about such a big time gap. So we compromised on six months, with a small bet on what my PSA will be by then. I said it would be under 80: he said he thought between 90 and 100. We shall see. I'm looking forward to some of the more annoying side effects fading away over the next six months!!
I know it is a bit of a risky path to take, but then I've been doing that for 16 years, according to the experts who predicted my demise within 3 to 5 years of my diagnosis in 1996.
All I meant by a "crap shoot" is a gamble and if I read tour last post correctly that is the path you have chosen. In your situation it seems prudent.
My concern remains with that roughly 10% of men in early diagnosis where the doctors really don't know if their cancer is aggressive or not. The doctors I saw at Johns Hopkins weren't sure and admitted it. Their final recommendation, due to my family history, not PSA, Gleason scores or LAB tests was to remove it. As I mentioned, by the time surgery was scheduled it had already spread.
My point remains that the only clue that I had PC was the sharp rise in PSA and while I agree it is not a perfect test, it was all that saved me from the same fate as my relatives. While the majority of men will not die from PC, about 16% of the men diagnosed will. When you are in that 16% category the PSA, with all it flaws, becomes the only early warning system currently available.
I apologize for misreading your sentence. Even though there was a typo I should have known what you meant from the context. And I can't blame my lack of perception on summer heat. Incidentally, it was Mark Twain, a great American humorist, who said something to the effect that a mistake in a book on vitamins could be dangerous to an innocent reader.
I was reading today a post by a gentleman who was working with Dr. Meyers because of recurrence after radical procedures. He was taking several supplements recommended by Dr.Meyers along with Avodart. In time his PSA went up and Dr.Meyers recommended adding Lupron and Casodex. For some reason he would not explain, the gentleman decided not to take the doctor's advice but decided to let nature take its course.
Incidentally, I could swear I saw a video or read a newsletter by Dr.Meyers in which he said the only thing men aged 80 and older should do is take Avodart.
I suspect the solution to the problem of over treatment would be to call a Gleason 6 pre-cancerous. You might be quite willing to have your doctor remove a pre-cancerous skin lesion but you wouldn't be so quick to have your prostate removed or radiated because it had some pre-cancerous growth.
Dr Jonathan Oppenheimer, a leading US pathologist, has been proposing something along those lines for many years. He was one of the drivers to change the Gleason Grading so that Gleason Scores lower thsn 6 were no longer designated as 'cancer'. That of course had some unforseeen consequences as the Gleason Grades 'migrated' with GS 5 material being graded as GS 6 and so on up the grades.
Perhaps if this kind of approach could be adopted we'd avoid what Dr Christopher Logothetis, another PCa expert said (as quoted earlier in this thread) many years ago:
One of the problems with prostate cancer is definition. They label it as a cancer, and they force us all to behave in a way that introduces us to a cascade of events that sends us to very morbid therapy. It's sort of like once that cancer label is put on there we are obligated to behave in a certain way, and its driven by physician beliefs and patient beliefs and frequently they don't have anything to do with reality. [/url]
