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Rising PSA's after treatment - an answer
Prostate Cancer | Last Active: Jan 11 8:59am | Replies (31)Comment receiving replies
I see your perspective, but I would like to suggest some other possibilities. My experience has been that cancer doctors are among the most optimistic MDs around and research cancer doctors are among the most optimistic cancer doctors. Therefore, I treat the new reports of "breakthrough" possibilities as just that, and the clinical standards of care as more sober realities. [They also get paid for treating, not for waiting :-), and for addressing their clients concerns and fears, even if they're not entirely rational.]
I think you're right that the "right time" to do salvage treatments after RP is drifting down. My urologist says around 0.10 (using ultrasensitive PSA assays) is probably the best guess. In my assessment his judgment is sober and well-informed.
The arguments about when to treat include health-related quality of life as well as longevity. Having just watched my sister die of a different cancer, I can testify that quality of life can vary a lot along the journey with cancer. These are hard issues to think about, much less know how we will feel when the time actually comes.
So I would say the "best hopes" will usually get scaled back and knowing that should also be taken into account when deciding on courses of treatment. For instance, I like to remind people that no one once diagnosed is ever "cancer free," that's just a convenient euphemism for "we can't find further evidence of your cancer at the moment with our current diagnostic tools." Instead, once my cancer reaches a certain stage (mine is stage 2, I believe) I will never be reversed to stage 1, much less stage 0. To be crass, I have a bell in the garage and I can ring it whenever I want. When I "ring the bell," I'm just hoping I won't have to come back again for a good while. But sometimes that's because there is no longer any effective treatment available today--in 10 years, maybe, but I was alive 30 years ago and the hope was exactly the same. And yes, we do have better treatment strategies and techniques and longer lives with higher hrQOL, but also yes, people are still dying from prostate cancer.
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Sorry to hear about your sister. You make a good point and it's one I've told friends and family when they ask how I'm doing. I tell them so far so good but the worse thing about this disease so far is that for the rest of my life I'll never know if the cancer is truly gone and never coming back. The common 5-year remissions = cure is a bunch of BS in my mind with cancer in general. It's an odds game. A lot of people (without cancer) think, they cut it out and your tests are good a few years later so it's all gone right? Unfortunately maybe not and that's hard to live with in the back of your head. I have a new found respect for the mental fortitude anyone diagnosed with cancer has to have LONG TERM.
Because the progression with PCa can be so slow it's not like a life attitude altering, near death experience, type of thing. In general I think when we are young (like teenagers or in our 20's) disease and death are not even in our mind's picture. At middle age, being diagnosed with cancer, even one of the most treatable ones, the foreboding of potentially going through more aggressive therapies and having a chronic disease the rest of your life is quite depressing and anxiety causing, especially waiting for PSA test results. I am slowly with each passing month trying to reframe my perspective about having the diagnosis and mortality in general. So far, it has had a far greater negative effective on me psychologically than physically. The pee bag and couple of months of significant urinary incontinence weren't fun but that's just a drop in the bucket (no pun intended) of eventually being on some kind of treatment for the rest of your life.
This diagnosis has really put the fact that something is eventually going to get me right front and center in my mind at my middle age. A massive heart attack in my 80's would be a blessing in disguise for me and my family relative to all other other things that could take you. Especially the slowly progressive neurodegenerative diseases.
Sorry I've gone off track a bit but I'm finding the discussion in this thread both informative and comforting. It feels better to discuss your situation with others more or less in the your same shoes.
But I'll be darned if I don't give it the "college try" to nip the problem at the bud if there's still a chance of doing that.
Even though this forum is targeted at more advanced stage, I've found the participants here to be far more knowledgeable in general than other forums discussing any aspect of the disease at any stage.