Reversal of penile shortening after stopping Lupron

Posted by retireddoc @retireddoc, Mar 20, 2024

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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pcrich | @pcrich | Feb 10 8:55am

In reply to @ecurb "As for myself, I m over the hill and thru the woods to grandmas house I..." + (show)

Thanks ecurb for your response. I get you. I am 73 (74 in a month) and not ready to give up just yet. Still think about sex a lot but with low libido and ED don't do much other than forcing myself to masturbate occasionally. I'm more concerned about my negative self-body image with the shrinkage and the other ADT side effects. Going to consult with new oncologist this coming Weds.
Thx again as well as to scottbeameup

glenninjb | @glenninjb | Feb 10 10:10am

In reply to @scottbeammeup "I think doctors deliberately don’t disclose this information because they know many more men would not..." + (show)

I agree. I was not told about penile or testicular shrinkage/atrophy. I would not have consented to treatment if I had known. I am 73, Gleason 9, one year after stopping ADT, still 0 PSA and 0 testosterone. I told my urologist that I wanted my testosterone back no matter what. I was thinking I would go on TRT but he suggested Clomophene instead for two months, then re-test both PSA and testosterone. I am almost one month in, feeling a little better, still some hot flashes but not quite as often. The Chlomophene is supposed by bypass the pituitary and directly supply LH to the testicles. If the little guys are still able to produce after two years of no LH, they should start working again. We will see....

retireddoc | @retireddoc | Feb 10 11:05am

When I went to see my endocrinologist about TRT (at the request of my MO since my T had not recovered 18 months post ADT/Lupron)he ordered initial labs including LH, FSH, T, PSA and CBC. He suggested trying Clomid only if the LH/FSH was low, indicating the hypothalamic/pituitary axis had not gotten the message that the T was low and needed LH to stimulate the testicles to produce T. My LH and FSH were much higher than normal, indicating that the testicles were "dead" and couldn't produce T anymore, so called primary hypogonadism. In that case, Clomid wouldn't help because LH was already high. So, straight to TRT and I fell great and PSA remains undetectable.

stevieg | @stevieg | Feb 10 12:03pm

I’m in the same boat brother looking for answers Lupron is hell I get one more infusion next month then on to the pills 🍀to you

garylr | @garylr | Feb 10 4:32pm

Same experience here, as far as what I was told up front about the side effects of ADT. I was told about "man-o-pause" symptoms - hot flashes, night sweats, weight gain, loss of muscle mass, mood swings, fatigue. But no mention of penile atrophy or shrinkage of testicles. I learned about that online (and through experience).

I have about 5-1/2 weeks left on a six-month course of Orgovyx. My testicles are half the size (or less than) they were before I started the ADT. I'm still able to get a half-way decent erection, with some manual stimulation - probably about 5" vs. about 6" before ADT. If that's the extent of it, I'm okay with that. Wife says "no big deal," and I think she's sincere in that.

Bought a vacuum pump after reading/seeing videos online from reputable sources (including Mayo) advocating "use it or lose it." I've used it maybe 20-30 times. It's uncomfortable and I just feel silly using it - so, no more.

Pleased to hear that some have seen reversal of these side effects after the end of ADT - fingers crossed!

retireddoc | @retireddoc | Feb 11 5:44am

In reply to @garylr "Same experience here, as far as what I was told up front about the side effects..." + (show)

One suggestion. If you aren't using daily generic Cialis, 5 mg, I would suggest you talk to your urologist about starting it. Dirt cheap now that the generic is available. Essentially no SE, and it does increase blood flow to the penis. Can't hurt.

garylr | @garylr | Feb 11 10:36am

In reply to @retireddoc "One suggestion. If you aren't using daily generic Cialis, 5 mg, I would suggest you talk..." + (show)

Thanks for the suggestion. I may ask my primary care guy what he thinks (by the time I could get in to see the urologist, I'll be done with the ADT).

nikolai57 | @nikolai57 | Feb 11 7:51pm

Had RP at age 65 followed by salvage radiation and 2 years of Lupron and abiraterone. Finished ADT this past October. RP shortened the penis in flaccid state. ADT caused shrinkage of both penis and testicles. I’m now 4 months out from stopping ADT and genitalia are returning to normal size. I’ve been on 5 mg dose of tadalafil ever since surgery, first to help with healing and then to help address urinary incontinence. Having my genitalia return to normal size is more comfortable and helps when urinating (no fishing for the little bugger), but libido hasn’t returned, and I can’t say I miss it. I used to think about sex all the time. Now I spend my days on other enjoyable pursuits.

heavyphil | @heavyphil | Feb 12 6:49am

In reply to @nikolai57 "Had RP at age 65 followed by salvage radiation and 2 years of Lupron and abiraterone...." + (show)

nikolai, glad YOU said it….thought I was the only one who felt that way!😆

larrybas | @larrybas | Feb 12 12:35pm

In reply to @heavyphil "nikolai, glad YOU said it….thought I was the only one who felt that way!😆" + (show)

Same here. I’m 74. I miss it cognitively, but not physically. What I mean is, as men, it’s been ingrained in us since the time we’ve been 12 years old to be sex driven. So I still look and fantasize, but not so much out of a lustful desire but more as an “I should want that.”