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My PSA has been rising at a rate that most people would regard as fairly frightening. It was 9 in July and 18 this month – a doubling rate of four months not being ideal. So it is pretty clear that the Zoladex is no longer effective. I had added Casodex - but that was not effective either so I stopped that some weeks ago. So this all points to the probability, based on PSA only, of the disease having become AIPC - Androgen Independent Prostate Cancer or HRPC (Hormone-Refractory Prostate Cancer). That in turn means that further Androgen Deprivation Therapy (known as ADT ) is likely to be ineffective, although.......sometimes using one drug instead of another can produce a good result.
Ahead of my scheduled appointment I did a bit of thinking about what I should be doing next and I realised that I had succumbed to PSA anxiety. I KNOW that PSA is not a good test, that it is variable for no reason, etc etc. and yes, I know that the standard response to any criticism of PSA is that “It is the best test we have.”, which really has nothing to do with the question of using PSA alone to make decisions.
By chance I received a number of items of mail that were relevant, in my eyes at least, to my decision making. One was a piece written some years ago by Dr Snuffy Myers, mentioning that SOME patients’ prostate cancer will not cause serious health problems until the PSA is between 1,000 and 2,000. That is borne out by SOME of the stories on this site. In fact ROY WHITE in Western Australia whose PSA went out to over 15,000 earlier this year before it was reigned back to “only” 1,100. With a doubling time of 3 months it would take me 2.75 years to reach a PSA of 1,000 so it seems I may have a bit of time in hand. Another was a study warning to be careful about using doubling times to make absolute predictions.
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 and I never forget the Golden Rule of prostate cancer. THERE ARE NO RULES.
I'm sorry to see your PSA continues to rise but I support your decision to ride it out for a while and see what happens. You've clearly beat the odds many times and I'll pray for you to continue doing that. I don't post here much but I check in often. Take care and God Bless.
I am deeply saddened by your latest posting. Bad things shouldn't happen to good guys like yourself.
I wish there was something more I could do in addition to adding my prayers to the others who proceeded me here.
Many of us are on the same path, so please keep us up to date so we know what to expect and/or what other options may be available to us (like chemotherapy?)
Hang in there as best you can. We all hope you continue to beat the odds.
Hey Don, no need to be sad! I'm still here and will be for some time yet - that's a guarantee:-)
We all have to pass on some time and I have hit my Biblical "best before" date of threescore years and ten; I've had a wonderful life; I have been able to help some folk over some hurdles. If I went up the chimney tomorrow I'd have no regrets - well, apart from the fact that I never visited all 51 States, having had to stop at 35!
And thank you all who've posted here and mailed me off the Forum. I appreciate your commetns and good wishes.
Cannot fault either your logic or your attitude. Perhaps there is something we all can learn from that in addition to all the scholarly materials you have provided us over the years.
apart from the fact that I never visited all 51 States, having had to stop at 35!
I'm rooting for you to eventually see all 50 (not 51) states and Washington, D.C., which has people who speak for them in the Senate and House, but have no vote in those distinguished bodies.
Is that too far off topic? But then again, you were the one who 'went there'.
Found this web site about 6 or 7 years ago after my husband was diagnosed with prostate cancer in April of 2004. I'm a nurse and had some medical knowlege having worked in surgery for many years. With a psa of only 4.2 John ended up with a Gleason 8 (seminal vesicle invasion bilaterally) but no lymph node involvement and clean margins. He had salvage radiation a year later for a rising psa of 0.2
Psa remained under 0.1 for about a year and then started climbing agian. It was pretty stable until November of last year (2011) when it jumped to 1.5. He is checked every three months and it has continued to climb. Last psa was on 12/04/12 and was 2.7
He feels good and has no symptoms. We joke, sometimes, that he is only sick on paper.
I'm telling you all this to let you know that I think your decision is the right one.
John has a good Dr. He doesn't want to rush into any hormone therapy until we have to.
John's prognosis was five years at best when he was diagnosed. It will be 9 years in April.
I definitely agree that there are NO rules to this disease.
A good outlook and a healthy lifestyle can help.
I have met several nice people through the site. Keep up the good work. You have done more for us than you can imagine.
Best of luck and we will be thinking and praying for you.
Sincerely, John & Roberta Lehman USA
(Pennsylvania)
Your comment We joke, sometimes, that he is only sick on paper. reminded me of my pal Lars in Sweden. I can't recall precisely when he was diagnosed and chose EBRT, but after several years his PSA started rising. His daughter was very concerned and cornered me on a visit to Stockholm about four or five years to ask how long I thought her father had - and what more he could do - he was on an intermittent ADT regimen.
Her mother, Lars' wife was diagnosed with breast cancer about ten years before Lars' PCa diagnosis. She looks well and it seems that her disease was dealt with adequately. Lars' daughter agreed that was the case. I pointed out that her father looked and seemed as well as her mother. Both lived full active lives. The only thing that was worrying her about her fathe was a test that is not very accurate. If there was a similar test for BCa, she might be just as worried about her mother!!
She seemed a little happeier after that and as Lars is still doing well, with no sign of dying just yet (although as he is in his mid-80s, both he and I know he can't live for ever!).
My biggest health problem right now are the consequences of my heart condition medication. How I wish I could stop those!
