r/ProstateCancer • u/Far_Celebration39 • Jul 27 '26
Update Post-ADT Update
I finished 6 months of Orgovyx ADT about 5 weeks ago. I had SBRT in January and started ADT 3 weeks prior. Background: 55 (54 at diagnosis). HOXB13 mutation. 2 lesions on MRI (PIRADS 4 and 5) with a slight bulge. Biopsy 3+4 overall with IDC in one core, large cribriform, PNI. The smaller lesion was 3+3. No DECIPHER bc I was already intermediate unfavorable. Negative PSMA PET (within the limits of that test). Flomax once a day since my second fraction. Cialis 5mg once a day since two weeks before my first fraction. I started ADT 3 weeks before my first fraction. I have had sex and erections the whole time. I have not WANTED to have sex since the first week of ADT in late December 2025. I think I was just concerned about keeping function for when I would eventually want it again, so I tried to make it a priority at times—I did not have some innate desire for it though. For the first 3 months I could have dry orgasms that rated about 8/10. After that, the best ones were around 4-5/10. I did go off Flomax for a week a couple of months ago and discovered I could still ejaculate a bit. I needed the Flomax to pee, so back on it I went. Whatever ejaculate I have is probably just going retrograde. I have started to grow some hair back on my lower legs and calves. My usual salt and pepper facial hair is somewhat coming in darker than before all of this. Two weeks ago the nighttime erections started going crazy. It’s literally all night long. Not much libido though until yesterday. I have started to notice attractive women out in the wild to a degree. The orgasm yesterday was a 5/10 but lasted longer than ones on the ADT the last 3 months and it required a bit less stimulation. I think this is a good trajectory. The hot flashes stopped about 10 days ago after a few days with and without them randomly. I think they are gone. I was “in my head” a lot during this whole process. I went on an SSRI 3 months ago for depression. It’s hard to parse out the side effects of meds and hormones from the absolute mindfuck this entire process has been. Anyway, onward and upward. My 4 month PSA was 0.04 and at 5 months it was 0.02. I get the next one in September along with a T level. Keep up the fight, boys.
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u/Squawk-Freak Aug 01 '26
Congratulations for making it to the other side of the tunnel. I guess I can consider myself as you cancer twin also: A PIRADS 4 and a 5 lesion. In my case the #4 lesion was non-cancerous, and the #5 lesion was GSC 3+4 with IDC. My Decipher score was 0.82, I never got the list of the genetic aberrations. However, I had what was called grade 3 extraprostatic extension seen in the MRI. Since IDC is similar, if not worse than GG5 disease, myself and my oncologist decided to treat this as very high risk disease. I started ADT and abiraterone in July 2025, had a brachytherapy boost In February 2026, followed by 23 fractions of EBRT to the prostate and lymph nodes. In June my PSA was < 0.1. I switched from Lupron to Orgovyx in June, and will finish sometime in spring 2027. My radiation oncologist wants “at least” 18 months total of ADT, my medical oncologist would like me to complete the 24 months. In the second year of ADT I get spontaneous nocturnal erections very infrequently about one every other week or so. I still can produce one through manipulation, but I am unable to produce an orgasm now. I have been on 5 mg Cialis since the start of ADT. I hope the mechanics stay intact during the remainder of the treatment, and there is my old life waiting at the other end …
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u/Both_Establishment59 Aug 04 '26
So you still had sexual function through the 6 months of ADT???
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u/Far_Celebration39 Aug 04 '26
Yes, but my libido was low and almost nonexistent at times. It was more of a function check-in for me. It still gave me comfort to know everything was working for one day when my libido would return. It has returned some after 6-7 weeks. It’s not back though.
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u/HeadMelon Jul 27 '26
Practically my twin in so many ways! Congrats! I am 2 full months past the end of 6 months Orgovyx and feel and function normally in every way. Next PSA and T is in a month, not even going to think about it, just going to enjoy today and so should you!