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Respectfully Disagreeing with Terry on AS worries, PSA & Age issues
Terry, I respectfully disagree with you when you define me as a worrier and say: “...as such you tend to take the worst case scenario instead of the best - or even to clearly understand that there is a range of outcomes rather than one definitive one”.
First, I worry when I feel I have been given something to worry about. I spent days researching perineural invasion, taking six pages of notes, and the vast majority of the information was negative. The only truly positive study I read was from Johns Hopkins, but then I found out that they no longer allow a patient with perineural invasion to be a part of their AS program. The only other thing to hang my hat on is that, in some studies, on multivariate analysis, perineural invasion has not held up as a predictor of extraprostatic extension & biochemical recurrence the way it has when viewed alone. It is because of the little bit of good news amongst all the bad that I HAVE HOPE.
Also, if I did not understand that there are a range of outcomes, I would not have sent my biopsy slides out for a third opinion “to break the tie” if you will. Plus, I would not be flying across country for a CDU scan (that includes a biopsy), which I am counting on to help determine whether or not the cancer is really near the surface or even outside of the gland. Instead, I would have already folded my tent and scheduled surgery. In fact, what I am doing is fighting to the last to avoid it.
Plus, I have to say that if I was the worrier you think I am, I would have given up on AS & had surgery long ago.
On a different subject, I have to disagree with you on skipping PSA tests between biopsies. While we know it is not PCa specific, I say what can it hurt to have three of them between the yearly biopsies to look for a pattern. It is even more important in my mind if you do not have yearly biopsies anymore like me, and I happen to know from reading your story that they are important to you as well in that, as you said, you haven’t had a biopsy for years. Despite not being PCa specific, you have relied on them heavily in making ADT decisions. So IMO, I think you are sending the wrong message.
Lastly, it looks like we are just going to disagree tonight. I was surprised by this passage in your last post: “...but men die at younger ages from all manner of things. Young men have to live long enough to die from PCa - and many will not make it”. I don’t know what to think about that except to say that I think it is a weak argument. It seems like you are saying don’t worry about PCa because most of you aren’t going to make it to age 76 anyway. I don’t know where you get that from.
In closing, you said earlier that you don’t mind people disagreeing with you as long as it stays on subject and doesn’t involve a personal attack. I hope that that is how you view this – just a disagreement.
Re: Respectfully Disagreeing with Terry on AS worries, PSA & Age issues
Alan,
I apologise for misreading and categorising your behaviour.
You say:
I hope that that is how you view this – just a disagreement.
I say: Yes. That is how I view it.
As to my .....sending the wrong message... that is something I have been told I have been doing for the last 15 years, so it is no surprise to me that this should be said again. I can only do my best but sometimes I wonder if there is any truth in a saying I saw the other day:
I'm only responsible for what I say, not for what you understand.
Re: Respectfully Disagreeing with Terry on AS worries, PSA & Age issues
Just two quick points for which I didn't have time earlier:
1. Frequency of PSA tests. You say Despite not being PCa specific, you have relied on them heavily in making ADT decisions. So IMO, I think you are sending the wrong message.
When I was first diagnosed I had annual tests (roughly - sometimes longer). The period between tests changed when the answers might give information that might indicate if a therapy was working or not - for example on ADT. The person to whom I was suggesting that it might not be neccessary to have quartely tests was in a better position than I was when I was diagnosed. He was not on ADT, nor had he undergone surgery or any other therapy. Whilst you may regard my message as 'wrong' it is not inconsistent with my own choice. And as I say repeatedly and frequently, I am not saying that anyone should do what I have done, but they might be interested to know what I have done since it has worked for me for some time.
2. You say I was surprised by this passage in your last post: “...but men die at younger ages from all manner of things. Young men have to live long enough to die from PCa - and many will not make it”. I don’t know what to think about that except to say that I think it is a weak argument. It seems like you are saying don’t worry about PCa because most of you aren’t going to make it to age 76 anyway. I don’t know where you get that from.
There is a difference between 'many' and 'most'. I used the former: you converted the word to the latter. Some of the men, perhaps many, who are young enough to have a life expectancy of say 28 years will die before they complete that term and since the mortality rate from prostate cancer is so low, they are more likely to die of something else.
What I was trying (and apparently failing) to say was that at all ages there are more risks of dying from something other than prostate cancer, risks that we do not obsess about. Overall less than 3% of male deaths are from prostate cancer, a figure that has not changed since 1976 before the War On Cancer was declared.
The number of young men who die from prostate cancer is very small. The number of men who are old who die from prostate cancer is higher, but so are the deaths of older men from other causes.
Perhaps I should have quoted Willet Whitmore:
Growing old is invariably fatal while prostate cancer is only sometimes so.
