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Acceptance of Prostate Cancer and its side effects
These discussions are mostly devoted to the nuts and bolts of prostate cancer diagnosis and treatment, and rightly so. Those discussions are immensely helpful to men understanding their disease and seeking the correct treatments.
I would like to reflect for a moment on how my almost 3 year journey with this disease and treatment has affected me and how I am trying to find acceptance.
I was diagnosed with Gleason 9 prostate cancer August 2021. No evidence of spread outside the prostate on Imaging. Underwent a RP in October 2021. PSA went up 6 months post op and on PSMA PET a solitary T8 met was discovered (now stage 4). Sought consultation at a COE and had SBRT to T8 with good result. Four months later PSA revealed rapid doubling time. Another PSMA PET showed positive node in pelvis with no activity at T8. Additional research on my part and ended up at Johns Hopkins under the care of Dr. Pienta/Diane Reyes. Had triplet therapy with Docetaxel, Lupron and Darolutamide in late 2022. PSA rapidly undetectable Testosterone < 3. Additional radiation to whole pelvis in spring of 2023. Taken off Lupron after one year and currently on no meds. Testosterone up to 31 last week.
After my surgery I had complete ED, unresponsive to any meds. Used vacuum device with rings but pretty unsatisfactory. Used Trimix which worked great but had urine leakage during sex with climaturia. Followed a stringent pre and post op PT pelvic floor program and now just have stress incontinence with occasional unexplained "squirts".
I heard previously that the prostate treatment was almost as bad as the disease. I concur. I had a very active and satisfying sex life which is now in shambles. My incontinence, which had gotten better the year after my RP, has worsened after the pelvic radiation. Also, the usual side effects of the ADT which have yet to abate 9 months after my last 3 month injection. And to add insult to injury, I have had penile shrinkage.
I am glad to be alive with a currently undetectable PSA (for the time being), but my life has been significantly altered in addition to the diagnosis of a likely terminal disease. I have been coping as best I can with therapy, exercise, gym and golf. But it has been difficult. I am part way down the path of acceptance, but I'm not quite there yet.
This site, and other forums, have been helpful to me to hear the stories of other men struggling with this disease and what they are doing to make their like better.
Thanks, prayers and good luck to all.
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I too take abiraterone and prednisone.....250mg/5mg each morning with a low fat breakfast. My butt shot is ZYTIGA/TRELSTAR every 3 months....I get up and feel fine til about 1130am...then its rest time....once I get an hour of rest in or sleep, I m good to go the rest of the day....Low T causes this fatigue I think. Bruce
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1 ReactionThe physical part of the disease is known and accepted for the most part but what trips a lot of guys up is the emotional roller-coaster that hormone treatment inflicts on many. My own father did not do well with this.
Chamblee54, you might want to take a look at a review done by "The Lancet" two years ago -
"Androgen deprivation therapy use and duration with definitive radiotherapy for localised prostate cancer: an individual patient data meta-analysis" (search for https://doi.org/10.1016/S1470-2045(21)00705-1 ).
It found the addition of just 3 months of ADT decreased the cumulative incidence of Prostate Specific Antigen (PSA) progression, local progression, and improved event-free survival, and reduced adverse outcomes by more than a third; 6 months of ADT cut the risk for adverse outcomes in half.
See also DOI: 10.1007/s00345-024-04862-0
The two questions I asked myself were:
1. How much longer might I live, but for my prostate cancer? - Answer: Although I am 78 and have some other health issues, I am overall pretty healthy for my age, with better than 50% chance of another 10 years, and better than 25% chance of 15 years.
2. How much am I willing to do now - while I am healthy enough to deal with any side effects - to minimize my chances of suffering metastasis, chemo, etc in the years ahead? Answer: A lot.
Everyone must make their own choice, with no guarantee what the outcome will be. I don't think the temporary side effects of thorough treatment now will diminish my overall quality of life all that much, compared to the (admittedly small) chance of a really bad outcome if I don't.
I watched my Mom die of breast cancer in 1969, and my wife die of PSP three years ago. No doubt, those experiences influence my own choice now.
I have decided to "prophylactically" treat aggressively now, in the hope of avoiding a worse outcome in my final years.
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8 ReactionsThe more I read on this forum, the more I am leaning towards no treatment of ANY KIND. Radical Prostatectomy is major, life altering surgery with serious life changing quality of life issues, Radiation almost as bad, and hormones and ADT, good God, destroy the man just to keep him alive. I am 70 years old diagnosed 2 months ago with Gleason 4+3= 7 w/ 70% in 6 of 23 cores, 3 cores had Gleason 3+4=7 w/ 40% I had Pirads 4 pm MRI w/ 12 mm lesion ( volume .42cc) my prostate is 50.4 cc so low volume tumor, I had PSMA PET showing nothing outside the prostate, and my Decipher score was 0.38 Low Risk of Metastasis, so it showed 3.4% risk of met at 10 years ans 3.4% risk of mortality at 15 years, average lifespan for men is 82 or less. Granted, that is with standard of care treatment. Risk with no treatment of any king increases your risk 100% so 6.8% big deal, I'll take those odds against ruining my life, I don't even want to have a catheter. I have done tons of research on all forms of treatment, including focal therapy, Hifu, Brachytherapy, Tulsa Pro, Cryotherapy, and they all have side effects. I have also done major research on the Ketogenic diet, intermittent fasting, and foods proven to fight prostste cancer, like cooked tomatos ( Lycopene) watched many You Tube videos with Dr. Thomas Seyfreid, Dr. William Li ( food as medecine) Dr. Ken Berry and many others. Glucose feeds the cancer cells, so eliminate all sugar of any kind, vigorous exercise reduses Glutamine which is the other cancer cell fuel, I've been on this one month, lost 13 pounds, feel great, yes it is an extreme regiment and diet for this former carb lover, and food lover, but I'm willing to sacrafice that rather than take a chance of even 10% of lifelong ED or Incontinence and havong to wear a pad or diaper, also some treatments like radiation can damage the Rectum and affect your bowels, I don't care if that's a 2% chance, I'm not taking it. At some point, quality of life is more important to me than seeing how long I can survive. Prostate Cancer is big business, billions of dollars and the medical industrial comples is geared to treat, surgery, radiation, emasculating drugs, you name it, not many doctors recommend diet & exercise to fight low or mid grade cancer. I watched my Dad go thru it, and even if it metastasizes after 10 years, it's not the end of the world, and very few men actually die from prostate cance, look up the ProtecT study in the UK same survival rate at 15 years for intermediate PCa 1/3 of men RP, 1/3 of men Radiation and 1/3 no treatment just Active Surveillance. Think very hard before having any treatment, there is no rush, even the most aggressive form take a while to spread.
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6 ReactionsObviously, this is a very personal decision. But, if I were in your shoes, knowing what I know now and having experienced the various side effects, I would do exactly what you are doing. Unfortunately, my tumor was high grade 4+5, and my chances of metastasis without treatment were much higher (happened anyway).
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2 ReactionsI was at first encouraged by the ProtecT results, too. But as someone elsewhere has noted, being 15 years out means the treatments that were followed up on are older treatments; current treatments would be expected to yield different results, no?
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1 ReactionI remember the feeling trying to decide what to do, but two years later I'm glad I did the RALP, with fairly similar information going in. I'm here because I've continued to learn as I face the journey. It was pretty hard to sort out things in the ten weeks or so between my first mpMRI and the RALP. In those ten weeks I was definitely inclined toward active surveillance or at least focal therapy. I understand better now why I was directed toward RALP in my situation.
While personally I can imagine taking the risk and keeping on going, those close to me were definitely not ready to sign up for a likely shorter lifespan.
On the other hand, my cousin seems to wish he hadn't done the RALP and my uncle, who has a complicating medical condition, has now done active surveillance, ADT, and more, and he would say we each should make our own choice.
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1 ReactionIn the ProtecT study, 75% of the men in the Active Surveillance group went on to have some form of treatment. So it is not comparing treatments vs no treatment, EVER. What we don't know is how many men will eventually have metastatic disease if they are NEVER treated before they die of something else. I'm sure it's higher than the 9.4% reported in the study for AS. I watched my father suffer and then die from bone metastases 8 years after his radiation for prostate cancer. I would not want to live with that cloud hanging over my head at an unknown percent chance, possibly as high as 50%.
Here is an article which models the projected outcomes of no treatment: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3091266/
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1 ReactionRadiation doesn’t damage rectum so far as SPACE OARS jelly protects the colon, installed thru perineum prior to RT. A new product on the market. I had RT a year ago, no rectum side effects yet.