Reversal of penile shortening after stopping Lupron

Posted by retireddoc @retireddoc, Mar 20 7:48am

I am a 71 yo diagnosed with Gleason 9 PC in August2021. Had RP 10/21. Six months post op PSA rose to 0.37 and a PSMA PET revealed a single met to my T8 vertebral body. Was treated with SBRT. Four months later PSA had risen to 4.5 (yikes! rapid doubling time) and repeat PSMA PET revealed positive single lymph node in pelvis with no activity at T8. Referred to Medical Oncologist.
After much research on my part I chose Dr. Pienta and D. Reyes NP at Johns Hopkins. They recommended immediate triplet therapy-Lupron, Darolutamide and Taxotere chemotherapy. I completed the therapy (Lupron continued) in December 2021. My PSA became undetectable after the 2nd chemo treatment and has remained so. I then had full pelvic radiation to my pelvis (37 treatments) in March-April 2022. I was taken off the Lupron after one year; my last 3-month injection was July 2022.
I have experienced the usual side effects of Lupron-hot flashes, fatigue, mental fog, muscle loss etc. I expected testicular atrophy but I didn't expect penile shortening. I have rice read this is a side effect. Have others experienced this? For those that have discontinued ADT/Lupron, is it reversible and how long does it take? March 2024 my PSA remained undetectable and my Testosterone had risen from < 3 to 31.
Having cancer, especially Stage 4, is bad enough. But the side effects associated with treatment (loss of ejaculation, ED, genital shrinkage) have really added insult to injury.
Any comments would be welcome. Thanks!

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In my 8th month of ADT (Lupron), and the shrinkage of everything is obvious! I use a vacuum pump to try to keep the blood flowing, and will stay optimistic. Fortunately, no more hot flashes, but still have some muscle aches which I just accept and hope will dissipate in time.
Thanks to all of you for sharing your stories; very helpful as we continue the journey!

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