1. < Prostate Cancer

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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psmick | @psmick | Mar 21 10:57am

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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remington | @remington | Jul 20 1:16pm

My urologist, a 30 something female, didn't prepare me for the side effects of Lupron or radiation either. BIG surprises!
My issue with "the head of the turtle" isn't living w/o sex, we've adjusted to that, but I'm feel like a 3yo because I have to drop my pants to go! Can't fish the little guy through my pants!

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tuckerp | @tuckerp | Jul 20 1:43pm
In reply to @gently "retireddoc, we all think our docs were doing the best they can to save our lives...." + (show)
@gently

retireddoc, we all think our docs were doing the best they can to save our lives. But it does help to know adverse side effects. Nice defense of the profession, though.
I gathered all the side effects on line. One UCLA doctor talked about dry ejaculations taking some getting used to. Hope they aren't painful. And I read somewhere about success with stem cells for the prostate.
Can prostate cancer patients take testosterone after treatment to hasten return of normal levels of the hormone?

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I had LARP in Feb 2020. I have not had to use any of the drugs. But I do not have a partner and I do not stimulate myself. I have not noticed any shrinkage but I also do not get an erection. I asked my urologist about TRT and he refused to even consider it. So I asked my GP. She said with 3 years of zero PSA and a clean PET scan, she would consider it if I signed a release. My Test was 320 last summer. I started using the cream and it runs about 710 now. I now have partial erections at night. No real shrinkage. I have the cialis but have not tried it. Still no partner. So it does help hasten the return. It also greatly improved my fatigue. I also have much more desire. My partner is fighting cancer herself.

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gently | @gently | Jul 20 2:57pm

Thank you @tuckerp this elusive information is very helpful. I so appreciate your response.

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scottbeammeup | @scottbeammeup | Jul 22 9:16pm
In reply to @retireddoc "Thanks. I have been taking 5mg daily of Cialis for several tears. Also, using the vacuum..." + (show)
@retireddoc

Thanks. I have been taking 5mg daily of Cialis for several tears. Also, using the vacuum pump. Have used Trimix penile injections to get erection.
I have read on a forum somewhere that after stopping Lupron/ADT when the Testosterone rises some men have seen reversal of the shrinkage, almost a second puberty.
I was told any of the sexual side effects either but I believe my doctors were doing what they had to do to try and save my life. Just a bad disease.

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I think doctors deliberately don’t disclose this information because they know many more men would not consent to treatment. I wouldn’t have had I known how damaging Lupron has been to my mental and sexual health.

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grandpun | @grandpun | Jul 23 10:23am

Thanks "retireddoc" and "remington" for your comments and questions.
I have the same short shot problem confounded by needing to use both hands to aim plus activate my artificial sphincter. It seems bizarre that I've had to develop a technique to stand at a urinal to pee but 2-years of trial, error (yuck), and practice paid off. Now only have to open the fly and belt/button to scoot the pants loose to pee.
Still, the little guy is barely up to the task and vacuum treatments (though probably too half-hearted) didn't work.
I did hear that some guys simply pull it 'till it hurts'. Not appealing at all. And with a RALP shortened/damaged urethra and AUS cuff, making it hurt is not going to happen for me.
Any other ideas and/or techniques would be appreciated.
Till then, standing tall and very carefully - -

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