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concerned about the future

Looking for some opinions here I guess. Am four years post prostatectomy and salvage radiation. PSA record; 6.8,Gleason 7, surgery (positive margins found and one SV invaded) - post surgery,.09,.12 - salvage radiation - post radiation .o7, .o9, .13 at present. Am quite concerned about the trend and fear further action will be needed in the future. All curative measures are probably in the past. Many unanswered questions in my mind of course. Could it be normal age related increase from residual prostate material? (fat chance I fear) If residual cancer, will a PET scan be of any help in locating the source for possible local treatment and attempt at eradicating? I have been told the free PSA part of the test is not useable after prostatectomy so that doesn't appear to be a tool. Is ADT or castration the only choice left open? At .20, I feel some sort of decision/action will be called for. Blessings to all fighting this "pussycat" of cancers, Jon.

Re: concerned about the future

Jon, my case is not all that different from yours (my story is under Allen Z), but my current PSA is much higher than your current one. None-the-less, my research and oncologist agree that waiting until I hit 4.0 or higher to start ADT is the course of action to take. I have seen a few well noted uros and oncs who support this approach, but of course some would say start the Lupron or whatever at even your low level. I am in the camp of waiting and think QOL issues more important to me than starting the ADT and no doubt subsequent side effects. No easy answers as you say with this "pussycat" cancer!

Take Care,

Allen Z

Re: concerned about the future

Jon:
A rising PSA is always worrisome to us PCa warriors. At this juncture frequent blood draws would appear to be indicated. Think in terms of a PSA test every three months or even better once a month.
A PET scan of one type or another appears to be warrented; the thought being aim before you shoot. When I had a Choline scan a few years ago the minimum PSA level was 2.0. The newer Axumin scan may have different criteria.
As you probably know PSA doubling time can be a critical factor in determining whether you are experiencing a recurrence and if so its aggressiveness and which treatment option may be appropriate. Think in terms of a PSA sampling every three months. If it were me I would get a monthly blood draw.
ADT or castration???! Way too early to determine, but the time is right for you to research your treatment options. If indeed you are experiencing a recurrence you may have several alternatives available to you including targeted radiation, chemotherapy and ADT.
Best wishes Don O.

Re: concerned about the future

Thanks for the replies. As usual this site comes through with brotherly concern and wise input. Not sure who my next consult should be with, Urologist or Oncologist. Guess I better do something along those lines. I appear to have some time but the trend is alarming. I suppose not much can be done till it gets more serious but that time will arrive I fear. Benign as some claim this disease is, it appears that those lucky enough to detect and make the sacrifice of early treatment action have the best success in beating the disease. Those of us who had late detection or delayed in taking immediate action, seem to have sacrificed better success rates for a few more years of quality of life and are now paying the price. (I hope any "newcomers" to this arena give some serious thought to those words for their own futures.) As many have related, every new ach or pain makes one wonder if it is caused by this "benign" disease spreading or if it is from some other cause. Having always had some amount of back trouble and now also having that reoccur has me wondering of course, since that is the usual next place this disease goes and makes itself known.

I thank all who participate in (and administer) this web site! It is a valuable resource, no understatement! It makes it possible to help and be helped. If I were a professional medical person in this field, I would faithfully monitor this site to learn the other side of what they see. (Maybe they don't want to know huh!) Until next time, best wishes and prayers to all, Jon.

Re: concerned about the future

Jon:
Urologist or oncologist? In my judgment you should consult an oncologist who specializes in prostate cancer. As a Minnesotan you have an outstanding resource available to you; namely Dr. Kwon who I suspect continues to oversee Mayo Clinic's Choline scan capability. Dr. Kwon develops protocols for some of his patients depending on scan results and refers others to PCa oncologists available on site.
Keep us posted. Let us know what you decide.
Best wishes Don O.

Re: concerned about the future

Jon, not to belabor things or challenge any of your comments at all, but just by reading your post, it appears to me you did take action "early" on, so not sure why you think you possibly sacrificed some years of quality of life vs. early treatment? I might not be reading things correctly or just not understanding the details of your information; but if you did what was right in your mind at the time, I would say not to beat yourself up over any decisions you have made on this journey (not that you are necessarily beating yourself up, but we all can second guess our decisions and that is not healthy in mind opinion!). Maybe it is possible you had "late detection" and that is the issue, but again, you took action and years of quality of life should not be forgotten.

Take Care,

Allen Z

Re: concerned about the future

Thanks Allen and Don. I guess what I meant was that all the years I probably had this and was unaware of it slowly gaining a hold in me were the quality years that I had when I could have found it earlier and had better success in treating it. As I have heard from others, my infrequent visits to the doctor and lack of yearly checks was not conducive to finding this culprit in time to deal with it successfully. My ignorance and the doctor's failure to check PSA (not putting the blame on him)allowed this thing to progress to the danger point. When I did request a PSA,(in my sixties and freshly aware of this disease), the doctor actually discouraged me by warning that it could cause needless worry. When the PSA came back at 5.7, I procrastinated for another year in denial. The next test came back at 6.8 and I finally wised up. These are things I would like to convey to all those younger men in order to give them a heads up, head start on how serious this can be even when they are still "immortal" in their youth (40-60). So yes, I had late detection because of ignorance and a wasted year because of ignorance again. You are right, doesn't pay to beat one's self up over past errors but maybe these things can be of some help to others. I have written a couple guys who have posted about being undecided and told them my story and regrets so they might be a little more serious about being undecided. Quality of life IS important but so is not dying or suffering regrets because of it. Thanks again for your understanding input. Jon.

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