Connect
Reversal of penile shortening after stopping Lupron
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!
Like
Helpful
HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
Connect
71 and kind of over it too. As I go from stage to stage, I refer to it as "the new me". It might be permanent or temporary but it is still new phase. Fighting our fight and finding our peace while doing it, priceless.
-
Like -
Helpful -
Hug
3 ReactionsI am in the middle of a two-month course of Clomid. I think it is helping. I feel somewhat better, some reduction in hot flashes (though they aren't gone completely). Still no spontaneous erections or morning erections, but I can get a so-so erection by masturbation, and have a dry orgasm. Erection is still not good enough for sex. My LH was very low before the start of Clomid, so my urologist thought it would be worth trying before TRT. If it doesn't get my numbers up by my next lab test, though, I will push for TRT. I am looking forward to being able to lose the belly fat I accumulated during TRT, and to do better at the gym.
My experience...
While on ADT, I experience the Man-o-Pause...
After stopping treatment, as T recovered so did my genitalia.
Two other things which helped, daily Cialis and use, aka, masturbation.
What's different after surgery, SRT, triplet and then doublet therapy?
No ejaculation
Greater physical and visual stimulation required to achieve erection.
Same for achieving orgasms
Then again, I can, so I may be an outlier.
Kevin
Kevin
-
Like -
Helpful -
Hug
1 ReactionThank you for your input. Scant information in the literature or from the physicians.
I'm stage 4 with Gleason 9 IDC and had my RARP at Mayo in June 2024. BCR at 3 months with PSADT < 3 months. Started Eligard early January, Abiraterone mid-January, and start 45 sessions of IMRT starting this April, assuming my PSA has dropped back below 0.5. Unfortunately my RARP was non-nerve sparing so errections are but a fond memory. I have definitely seen testicular, as well as penis shrinkage. I questioned the need to treat my impotence issue ASAP with a female PA at MAYO and was told that the "use it or lose it" was a myth and I sould not worry about it. I ignored this advise and pursue treatment elsewhere. Pills obviously had no effect. The pump works some, but firmness is only above the ring, so intercourse is not really possible - and certainly isn't very romantic! I got Trimix last week, but unfortunately, in the past week, I have developed a large inguinal hernia and a good size lump in my testicle, both of which are a bit painful, so my wife & I have put off trying the injection for the time being (I may suck it up and try it tomorrowfor Valentine's Day). I agree with @retireddoc in that Stage 4 PC and the prognosis is bad enough, but the side effects of treatment (surgery, radiation, ADT, AR's, Prednisone, chemotherapy, etc. add major insult to injury! I have all the typical hot flashes, fatigue, etc. Additionally, my blood pressue has risen dramatically (145/95), I get serious headaches I never had before, and my latest CT shows an enlarged liver with signs of NAFLD (which wasn't identified on November and December CT's). My MO says these are all lokely side effects from the ADT & AR. So I'll be starting blood pressure medications next week Furthermore, she told me the hernia is likely due to the ADT as it seriously impacts musculoskeletal tissues. All we can do is HOLD FAST!
-
Like -
Helpful -
Hug
3 Reactions