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23 days agoI have very high-risk localized prostate cancer and recently completed treatment with Eligard (leuprolide) hormone therapy. I'm also taking Atorvastatin for cholesterol management. I've been dealing with hot flashes and anxiety during this time. I know these symptoms are common with hormone therapy and may improve as time goes on, but I'd love to connect with others who have been through similar treatment. • How did you manage hot flashes and anxiety during or after hormone therapy? • What has your experience been like as these side effects changed over time? I'd really appreciate hearing about your day-to-day experiences and any tips that helped you through this process.
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22 days agoThese side effects from hormone therapy can be really challenging to navigate, and reaching out to connect with others who understand this experience shows great strength. Many community members have found relief through various approaches like cooling techniques for hot flashes, relaxation practices for anxiety, and staying connected with their healthcare team about symptom management options. Hopefully others will share their personal journeys and practical tips that helped them get through similar challenges during their treatment.
Community Member
21 days agoDear Thomas M — 3 yrs ago I was diagnosed with high-risk (not VERY high-risk) localized PCa. In Feb thru June 2024 I had 42x EBRT and 4 months’ ADT. I developed 29 so-called “side” effects including hot flashes, severe ED, and numerous complications of urinary and colorectal systems, plus weird stuff such as circadian rhythm disorder and anorgasmia. Two years after my treatment, none of my eventual 7 doctors and none of my eventual 11 prescriptions had done anything to improve or alleviate any of my side effects; in fact, the medicos did more to retard any progress than to help. So on 1/1/2026 I resolved to go outside conventional medicine in order to begin testosterone replacement therapy (TRT—which I’ve had to pay entirely out-of-pocket because none of my docs would authorize and insurance won’t cover). Almost immediately, my life changed for the better in numerous ways—sexual, of course, but also strength, energy, stamina, sleep, and hope. So my advice is this: You’ve essentially got to become your own doctor. You’ve got to read articles in professional urological and oncological medical journals and you’ve got to read the entirety of patients’ stories and comments in Outcomes4Me. And you may have to take some moderate but sensible risks, such as I’ve done with TRT. Best wishes to you in your journey; please keep posting so others can benefit from your experience.
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19 days agoHi. I was in same boat. Localized prostate cancer. Eligard firamon hormone treatment. I’d have to look back on MyChart to see which I had first. Then more shots six months later and 12 months later from first shot. That gave me 18 months of hormone therapy treatment. The shot works for 6 months after each shot. I was taking 10mg avorstatin before and during hormone treatment. I felt hotter some days. Don’t know if they were as bad as women’s hot flashes. I would drink water, seltzer, decaf coffee, green tea. To cool off or sleep with a floor standing fan on in bedroom I’m done with hormone therapy treatment no more hot flashes. I also had 28 rounds of radiation. No side effects. Now I get my Psa blood test every 6 months. I was diagnosed April 2022
Community Member
19 days agoHow did TRT work? Does that add or increase your level of testosterone? I would not do TRT. Increased testosterone levels feed the cancer tumor cells
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19 days agoMy Gleason score was 8 as my urologist told me
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19 days agoI am post treatment. I got my biopsy results April 2022. Began hormone therapy May 2022. Attempted davinci robotic laparoscopic prostatectomy Aug 2022. Couldn’t remove tumor. Began 28 rounds radiation. 5 days a week. Finished radiation Nov 2022. Finished hormone therapy treatment May 2023. Post treatment surveillance now. Psa at time of diagnosis was 4.7 to 6.0 range my last PSA June 2026 my PSA was 0.18. It was 0.01 in 2023. My urologist told me the Psa goes back up because your body doesn’t have the protective benefits of the hormone therapy treatment any longer. They wear off. Now blood test Psa every 6 months or year. To see how fast your PSA doubles.
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19 days agoUpdate. My new general practitioner is lowering my medication as my cholesterol numbers were very good. In two months check heart etc and if testosterone seems to be coming back naturally. I don’t expect to be 40 but I would like to build muscle and get weight to my normal.
Community Member
19 days agoThis flurry of postings is so interesting for me because it shows the diversity of alternatives, choices, risks, and purposes of the various treatment modalities. I will defend my choice to go against doctor advice and initiate TRT on several grounds. First, having acquired 29 negative side effects from radiation and hormone suppression, my quality of life was zero. That made me more willing to take risks. Second, at least three research studies or clinical trial results released this year point decidedly to TRT being significantly safer than previously presumed by conventional medicine. Third, TRT in 12 weeks took my TT measure from 93 to 982, subsequently reduced by lower dosage to 792 and restoring my sexuality (in spades), cutting body fat from 23.5% to 13%, increasing upper body muscle mass to 6% greater than 15 years ago, largely erasing the insomnia that had given me 2 to 4 hours of sleep nightly, and boosting energy and stamina to pre-cancer treatment levels. Yes, my PSA has increased during my now-6 months of TRT from <0.01 to 0.6 and I’m testing frequently. I understand and accept that’s too risky for some, but for the first time in three years I feel like living. I should also add that I’m nearing age 78, and I may have chosen not to go with TRT if I were 10 or more years younger. After all, making it to age 78 isn’t a bad run.
Community Member
19 days agoMy weight went up during treatment. Now post treatment. I finally feel in the right place. I’m eating better again. I’m wearing a free Fitbit inpire3 from my health insurance company and trying to walk more. I have lost 22 pounds since my Medicare annual wellness physical with my pcp in June 24. Now I look forward to weighing each day at home to watch the pounds go off slowly. I still have a lot more weight to lose. Mostly because of my age I just walk or use small hand weights and resistance bands and indoor chair assistance exercises
Community Member
19 days agoSo I can understand better what is TRT? I read TRT earlier today and thought it meant increasing testosterone through injection or prescriptions. What does one do during TRT. It may be different than what I thought? 29. I had diarrhea one day but my oncologist said it was fine to take Imodium otc orally. Are the trials on animals or humans I just want to learn more. I will say that I consider my self fortunate to have been where I am geographically during my diagnosis and treatment. All of my doctors and specialists are part of Yale New Haven Medicine. I know the quality of health care available around the USA is not the same everywhere. If I was still in the small town rural area where I was born. My outcome could have been 180 degrees different
Community Member
19 days agoDear John P — Thanks so much for your questions. I will answer each one, recognizing this is solely from my individual experience, plus my reading of you and all others who post on O4M and also reading the professional urological and oncological articles and press. You ask the following: 1. What is TRT? A: Testosterone Replacement Therapy. I self-inject 0.20 ml testosterone cypionate once every four days. TRT is thought to be controversial because testosterone is “food” or “nutrition” for prostate cancer cells. 2. Wht does one do during TRT? A: I do the injections and perceive effects. That’s all. 3. Are the trials on animals or humans? A: All of those I’ve studied are on humans. 4. Geographic advantages? A: I believe you are correct. I moved from a remote mountain town in Montana to Denver because Denver handles more than quadruple the patient load of the entire state of Montana in prostate cancer treatment.
Community Member
19 days agoMy second PSA was <0.04 after ADT finished. Urologist said not detectable.
Community Member
17 days agoThomas, like some others here - I too had the option of surgery or radiation. It is a personal choice which way to go depending on one's lifestyle and overall health condition. My Gleason score was just under the need for hormone therapy so I (based on all of the above) chose radiation (5 consecutive sessions of 1 hour each, but there are other options of shorter sessions [15 minutes] throughout 46 days). Exercise and a good diet is key with either decision of surgery or radiation. Lastly, discussing with my family and healthcare team was also key. And a mental health provider is also a good idea given all the emotions one has to navigate. Hope this helps your decision; wishing you many blessings and a positive outcome.
Community Member
12 days agoWhen you are on Adt such as orgovyx, for a sufficient amount of time does the side effects wear off where they are not as bad?
Community Member
12 days agoI finished 2 years of Eligard Nov 2026. Hot flashes stopped around 1 month after it wore off in March 26. Even though I walked alot and had a valet job before diagnosis which required going up 44 stairs 15 times a day I had fatigue in the side of my hips from Eligard. Been off for 8 months and still fatigued. Have been at gym during last three years of PC treatment. My PSA is < .04 after 8 months off. Testosterone going up and im just keeping up the weights and getting back to stairs without fatigue.
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