January 2000Radical Prostatectomy (RP) wth Gleason 4+3 (80% pattern 4 which would classified as Gleason 8 today)
First eleven years after RP PSA ranged from .003 to 0.02
Years 12 thru 14 after RP, PSA ranged from 0.121 to 1.00
C-11 acetate PET/CT scan ; Radiation to C-7 and radiation to lower pelvic nodes
Years fifteen and sixteen, PSA < 0.04
Seventeen years post RP PSA rose to 0.93
C-11 scan confirming one spot of PCa on right sacrum; Radiation to lower sacrum
Eighteen years post RP, 8 months on Zytiga
Nineteen years post RP, PSA rose to .70
PSMA Pet scan at UCSF; single metastasis on rib.
Twenty years post RP until today, starting twenty -one years
Radiation to rib and started Casodex ; PSA has remained undetectable at < 0.02
My oncologist wants me to consider stopping Casodex all together with the rationale being that since PSMA is now FDA approved (and covered by insurance), if the cancer returns again then it can be found early.
I guess there is a small chance that I am actually cured at age 82. Your thoughts?
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shortPSADT
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I'm only repeating what my doctor told me. It's almost a given that it is now covered by Medicare and, at least in my case, coverage by Medicare means covered by private insurance as well.
Sorry ...I was wrong. The FDA has approved the PSMA test but it is not yet approved by Medicare. That, I am told, should happen by summer and then most insurances will cover it too.
21 years! You are having a great run, with, fortunately, a not very aggressive kind of PC. You are not cured, however, and you never will be cured unless there is a new kind of medical therapy discovered. But so what? It only means that you must continue to manage the disease. I know a lot of men with HIV who have managed it for 25 years or more. That doesn't mean they are cured, it only means they live with it.
There is no evidence that zapping metastases accomplishes anything, although it certainly lowers PSA. The latest data from MAYO suggests that bone metastatic PC is not cured:
I have to keep remembering this all the time”There is no evidence that zapping metastases accomplishes anything,”. Sometimes I forget :-). Thanks for reminding me of this.
There is also no evidence that it accomplishes nothing. There is just a lack of evidence so far. That's why I say, if it is safe, why not? And don't skimp on systemic therapies that we know work.
You've done very well so far in your battle with cancer. I think there is a chance that your cancer is cured, but it's not a big one. With metastases cropping up in different places, as they have in your case, I would think that you've got micrometastases in other places too that might become significant in the future. But even if you're not cured, it looks to me like you have a decent chance for a long run of pretty good health and may not ever suffer from cancer pain or die of PCa.
With a total lack of medical or even scientific training I can't advise you to take my advice too seriously but, what the heck, here's a suggestion for you to consider.
You are getting on in years. Treatments that a 52 year old man might take in stride could be tougher on an 82 year old. However you have done very well with the treatments so far and your cancer is pretty well controlled. Maybe the way to think about the future is to try to optimize a trade off between aggressive cancer treatment and having an enjoyable life. Get enough treatment to hold down the cancer, but no more than that. Maybe that's what your oncologist was thinking when he suggested stopping the Casodex.
I don't know if that's a good idea or not but it's something to discuss with your doctors and to consider each time you need to make a treatment decision.
I hope that ten years from now you'll still be talking to the rest of us (including me if I'm still around :^) and wondering what to do. But whatever you do, don't forget to make the most and get the most enjoyment from the time left.
Clearly, SABR is a safe and effective way to forestall progression of treated metastases and improves oncologic outcomes in certain patients. Furthermore, complete consolidation of detectable metastases improves time to progression.
If you lived with PCa for 21 years, you can continue to do so without cure. If you have mets in bones and lymph nodes you probably will have to continue to treat your cancer. My experience is that mets too small to be detected with a PSMA PET/CT will grow to a visible size and be detected a year or two after the last PSMA PET/CT.
My oncologist wants me to consider stopping Casodex all together with the rationale being that since PSMA is now FDA approved (and covered by insurance), if the cancer returns again then it can be found early.
Why do you want to find the cancer when the PSA is undetectable? I would just live with Casodex for several years and start radiation again when the PSA value has significantly increased again.
You have stated what your Doctor has suggested. What are the possible downsides to continuing your present course??? What are the possible downsides of altering your course as the DR. has suggested?? This is cancer so downsides need to be considered. You are a "PCa long-hauler" .... CONGRATS.
The only real downside is complete loss of libido. My doc says I'm swimming in testosterone (for my age) and I think that is the main reason for his suggestion. My inclination is to stay on Casodex for another year or more -- I'm tired of radiation, etc.
IMO decisions might be influenced by: #1---what treatment is most likely to keep PCa down the longest .... taking the long view.
#2---how do you want to live -- e.g., is libido very important to you .... then, if you chose libido for example, what are the potential consequences of a decision like this????
#3---conversations with those who matter in your life about the consequences of various treatment decisions might make sense
I had a 4+3 as well in 2019....don't know the pattern....I will take your results and your treatment happily if I make it to 82. Cured, not cured, in remission or whatever, it's still a great run you've had and hopefully it keeps going. In dental school I witnessed an autopsy and the cadaver died from one disease, but he had ELEVEN things happening that would all eventually kill him in a couple of years...so why worry? Best of luck!!
Have you had your germline or Somatic Mutations Check? I and my two brothers are all TMPRSS2-ERG Mutated. I am at 27 years survivor with lymph node mets and met to my hip bone before going on Casodex 3.4 years ago at PSA 12.2. Now (age 80) , I am My PSA is 0.0456 rising from a minimum of 0.0156 over last six month. I am also taking Avodart & Proscar. metformin, 100 mg of Doxycycline ,vitamin d3 =15,000 IU as my genes make me a poor absorber. Femara, Chrysin and Ca Guttural to control breast growth and Pain along with Dostinex to block aromatases turning Testosterones in to Estrogen. I Got my brother (28 year survivor) to start taking Nitric Oxide booster to help with muscles and Covid Clots after getting off Xtandi because of fatigue and trouble walking. His PSA off of Xtandi went to 6.2 from 0.078 in 8 months doubling in less than every 2 months. Now 8 months later his PSA on Nitric oxide has drop to below 2.0 and is not doubling. He no longer needs a cane to walk with. Nitric oxide at higher levels in the blood can slow cancer growth especially for men with TMPRSS2-ERG mutation.
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Wondering where this is headed....rising PSA and bone mets
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PSA rising - When to get a PSMA PET scan?
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