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a month agoI'm looking at three different treatment approaches that combine radiation with hormone-blocking medications for my prostate cancer. My doctor explained that one option uses standard hormone therapy (ADT) to lower testosterone levels, which may help the radiation work better. Another option adds abiraterone (Zytiga or Yonsa), a newer hormone-blocking medication that might provide additional benefits but is considered experimental in this setting and has more potential side effects. I'd love to hear from others who have faced similar treatment decisions and learn about your experiences. • If you've had radiation combined with hormone therapy, what was your day-to-day experience like? • For those who considered or used abiraterone with radiation, what factors helped you make your decision?
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a month agoDear Kevin D — I was diagnosed in August 2023 and faced the same choices that you list, except I was not offered abiraterone. I am Stage 1, PSA 6.7, Gleason 4+4, in only one core and size 0.83mm. I had 42 EBRT over 8 weeks and 4 months ADT. Like most patients on Outcomes4Me, the effects were far worse, more severe, and long-lasting than was represented to me by my so-called “care team” and in patient literature. If I had it to do over, I’d elect no treatment. I’d rather fight cancer than castration. In 22 months since end of treatment, I had no recovery of testosterone. My colo-rectal system is essentially destroyed; I never have a bowel movement that even slightly resembles “normal.” I regularly have blood in urine and stool. What saved my life starting 2 months ago is TRT. I recognize its risks and accept those risks because it gave me back a life that for now is worth living. TRT has given back sex with my wife—after the near-destruction of our 57-year marriage, given me back my competitive running (till 2023 I was a world-ranked masters marathoner), cut my body fat from 23% to its original 13%, and restored my energy levels of old. Still, much of the damage of cancer treatment is permanent, and I regret being almost certainly overdiagnosed and overtreated. Be very careful in the treatment you choose; once chosen, there’s no turning back.
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a month agoThese treatment decisions can feel overwhelming, especially when weighing the potential benefits of newer therapies against additional side effects. Many community members have shared valuable insights about their experiences with radiation plus hormone therapy combinations, and the day-to-day management strategies they found helpful. Connecting with others who have navigated similar treatment paths often provides practical perspectives that complement medical guidance from healthcare teams.
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a month agoThanks Dave
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a month agoI completed 45 sessions of proton beam radiation in December. Because I have a very high risk disease (Gleason 9 and 10) and have the BRCA2 gene, that may increase the likelihood of future recurrence I was placed on the hormone drug Orgovyx in September. In October I added abiraterone with prednisone. In January, my doctor made a change, eliminating the abiraterone/prednisone and substituting the drug Nubeqa instead that I take every day along with the Orgovyx. Radiation was not much of a problem (although it was tough to have a full bladder every day at radiation time). I’ve had side effects with the hormone drugs that are not pleasant, but I’m functioning normally. It’s important to try and precent muscle loss (gym). I’ve had some fatigue and hot flashes, especially at first, but that has improved over time. Recent MRIs and PSMA PET scans were good, and PSA was 0.06 and testosterone was 6. (I miss testosterone!). Currently, there is no evidence of cancer. Hormone drugs also screw up lipids—LDL and triglycerides were higher than ever, and my doctor increased my statin dose.
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a month agoI am currently in treatment for prostate cancer. I have had my prostate removed. My PSA went up after 3 months. So now I have had "salvage radiation" and hormone therapy. I guess the idea is to destroy all the cancer cells. Because the cancer cells float through your blood stream and travel through your nervous system, it is unlikely that all the cancerous cells will be eradicated. If there was a cure for prostate cancer, it would be no secret. But there is none. There are only three scenarios for prostate cancer: 1. It is caught very early and treated. This can eliminate it in its entirety. 2. You have prostate cancer that is "advanced" meaning cancer cells outside the prostate, in which case there is no cure. It is just a question of how long can hormone deprivation, chemo, and other drugs stave off the spread to vital organs. 3. Because prostrate cancer is a relatively slow growing cancer, you may die of something other than the prostate cancer.
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24 days agoIt is SO CRITICAL for all PCa patients to recognize Mark Sewell’s “three scenarios for prostate cancer” (directly above). That’s because you will almost certainly never be given these blunt, real-world cancer implications by your “Care Team” or by any Patient Information material. Instead, you’ll be given a bunch of vapid happy talk that glosses over or completely ignores the stark implications of your life as a PCa patient, which you will be for the rest of your life. This is your lot in life, but NOT due so much to adverse effects of cancer but due to adverse effects of cancer TREATMENT. For examples, see my earlier comment near the top of this thread. Or read a few dozen of the patient stories contained throughout the Community topics of Outcomes4Me—they reflect the realities of PCa, which few patients will be lucky enough to get from their doctors or other providers.
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24 days agoIt seems as though the treatment can be just as bad as the cancer itself.
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24 days agoIn my case the treatment has caused 100% of pain, disruption, and destroyed quality of life. The cancer never caused so much as an itch and probably never will. As is true for a great many PCa patients, based on post-mortem studies. Such reports have appeared in professional medical journals and are available online.
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24 days agoDave S, I’ve had no pain other than peeing a lot especially at night. No blood in my urin, no pelvic pain, just m able to get an erection without the little blue pill. Just an elevated PSA and the cancer hasn’t pertruted outside the sack.
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23 days agoSo Kevin D: Where are you in your course of treatment? My major negative effects didn’t fully kick in till weeks after completion of both EBRT and ADT, which was almost exactly one year after diagnosis. Then followed 22 months of slowly degrading sexual, urinary, and bowel function. These effects were mostly arrested after seven weeks of TRT and daily sex or masturbation, which at my age 77 is not the sort of orgy you may imagine.
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23 days agoJoe A I have completed radiation treatment and have undergone ADT that ends in July. Radiation was tolerable. Only problem was maintaining a full bladder which was annoying. Started ADT in August of 2024 and will complete the protocol in July of this year. I had no trouble undergoing radiation treatments. Wish I could say the same for ADT. I would recommend that you go online to many reputable websites to learn of the side effects of ADT. I didn’t and my care team gave me the abridged version of possible side effects. My oncologist offered “It’s the hormone shot “ whenever I complained of a side effect. I was looking for some kind of direction to help me deal with my issues and ended up being patronized. Look at the list of side effects so you won’t be surprised like I was. My best advice is to build a good support team. I had a loss of self esteem and mentally beat down. My wife was my staunchest supporter and assured me that despite the physical changes, I was still the same man. Another person who is vital is an empathetic PLP. My nurse practitioner provided more support and assistance than my oncologist. Friends and neighbors are also supportive. Take advantage of their offer of concern even if it’s only to ask how you are. Lastly, remember ADT is challenging but it is on a time frame and will eventually end.
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22 days agoMy first biopsy was a 4+ 4 Gleason 8. Second by a different doctor was 4 + 3 Gleadon 7. I have family history of prostate cancer so choose surgery. After surgery the pathology report was a 4 + 5 Gleason 9 w seminal invasion and 1 lymph node. PSMA negative 4 months after surgery with PSA of .54. PSA down to .04 and still there after start of radiation and Eligard for 2 years. Do you think the doctors knew what the results would be before hand ? There is evidence that 15 % of prostate cancers will be lethal. That leaves 85 % chance that you could die with the cancer.
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21 days agoI am on Orgovyx and will be completing 28 IMRT treatments May 11. Orgovyx can cause muscle and joint pain, which I am experiencing. ADT and radiation can both cause fatigue, so expect to feel more tired than usual. You will likely also have zero sex drive. My Radonc assures me that these side effects should go away once my testosterone recovers, which can take 3 months to a year after completing ADT.
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21 days agoWell, Robert K, my radonc said the same to me on the last day of my 42x EBRT and 4 months ADT. That was June 13, 2024. After 20 months, my so-called Care Team at last declared my “recovery” non-existent in all respects—zero testosterone, zero libido, zero sexual functioning, and steadily worsening urinary and bowel effects. It was only by going outside the medical-industrial system to concierge medicine that I now have significant progress and enough quality of life to lose suicidal impulses. I hope your experience is better than mine, but based on what I’ve read for two years in Outcomes4Me, I suggest you not count on it.
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20 days agoI had a Gleason 4+3, psa 9.9 in May 2023 Had robotic surgery in October that year . Thinking I’d be done they discovered lymph node involvement and thus diagnosed with stage 4A. PSMAPet scan in December confirmed the spread to iliac and retro peritoneal LN. Started hormone therapy of eliguard every three months and daily zytiga. April to June of 2024 did 40 rounds of EBRT. Last shot of eliguard in September 2025 and last zytiga this past New Year’s Day. Four months later I am finally starting to feel my energy come back, had a couple morning erections and much more motivated than a year ago. First blood test was undetectable after 3 months. At the onset my docs told me this is a three pronged approach to combatting this. Remove one and it’s merely palliative care. Two years seemed like a long time when I first started, but in all honesty it was not that bad. Worst part is the zero libido and trying everything we could to achieve some type of erections for my wife’s sake. I now have a drawer full of tubes, lubes and batteries! lol! And a bunch of syringes from trying the penile injections(not fun) I’m feeling very confident that this approach worked and I’ve bought myself 20 more years. I was 58 when diagnosed, 56 when I had my first biopsy. I told them if they get me to 80 I’d be happy. Good luck to you in your treatments and your journey through this.
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16 days agoDave I was taking casodex but I’m getting switched to Enzalutamide 40 MG a shot of Leuprolide Acetate every 3 months starting on the 18 of May.My PSA went down from 5 to 1.99 in little more than 3 weeks with taking casodex and some lifestyle changes. Radiation will commence sometime in late May early June due to a high 5+4 - 9 Gleason score.
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16 days agoKevin, are you doing EBRT and/or other modality? And how many sessions? For 5x per week?
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16 days agoI was on the abiraterone (taken with a 5 mg Prednisone) but not at the same time as radiation. I had no side effects from the abiraterone. Worked well for several years, then cancer mutated.
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16 days agoI was diagnosed with Stage IVa prostate cancer (node positive) Gleason 9 prostate cancer in 2018. Following 3 years of ADT/Lupron, concurrent with 2 years Zytiga and 45 fractions of radiation for a total of 81 grays, my PSA remains <.1 at the 7 year mark. Fatigue early in treatment, loss of body hair and gynocomastia were effects. I’m feeling well now, but recurrence is likely. I do PSA testing every 3 months to stay on top of it. Radiation cystitis and proctitis were treated, and all is well now.They were the consequence of high dose radiation. Of course I would endure all that again for the life extension.
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16 days agoSee the Stampede trial for benefits of the treatment I had, and you are considering. Naps, walks and light weight lifting helps.
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16 days agoAfter PSA 6.0 but Gleason 10 in 2021, I did brachytherapy, IMRT, and Zoladex 18 months. Unfortunately about a year later PSA climbing, PET showed lymph metastasis but not extensive. Now on Orgovyx and Nubequa. T can recover faster with Orgovyx if stopped. Nubequa seems to add zero additional side effects. In my case, I definitely would’ve added ART from the beginning if only insurance would’ve covered; it’s very expensive. Definitely check out pcri.org on YouTube. Best of luck to you.
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16 days agoThis thread has developed into the longest one I’ve been part of over the past 2+ years, and I think the reason is the diversity of experience. EXAMPLE: Directly above, TD H says, “Of course I would endure all that again for the life extension.” I REACHED THE OPPOSITE CONCLUSION. On 01/01/2026 I decided to go outside conventional medicine and pay my own way in order to get access to testosterone replacement therapy (TRT). I know and accept the risks. I’ve consciously chosen quality of life over quantity of life. TRT could cost me 3 to 5 years. That’s not huge, as I’m 77 now.
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15 days agoWe have had a variety of experiences, and weigh those experiences differently. Like you, I consider quality of life v quality. For now, no matter progression, I am disinclined to consider chemo should it be recommended on progression.
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11 days agoHello community I had a Gleason score of 7 4+3 and a possible lymph node. I went through 25 sessions of radiation and now almost a year into ADT. My PSA went from 9:00 to 0.2 6 . My testosterone levels are at 70 and my doctor wants to give me another medicine to lower it even more. I told her after the year is up for my ADT treatment I'm going to stop so it's no need to give me another medicine is this reasonable with my results. After just being finished 3 months out radiation
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11 days agoJust to add on the lymph node was not conclusive but they treat it anyway.
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