Can we talk about boobs please? Man Boobs. ADT induced gynecomastia.
I ended a 24 weeks of ADT (Orgovyx and Erleada) on Aug.28 2023. About 12 weeks into the treatment I had lost about 70% of my body hair and my chest had started to enlarge. I knew that this was a potential side effect and mentioned it to my Oncologist's Nurse Practitioner and the nurse who over the drug study I was in at the time. I also mentioned that one side was bigger than the other. They both laughed and said "join the club". I said that I had read that one of the side effects could be sensitive breasts, but that my breasts weren't sensitive but that I was started to get sensitive about my breasts. We all laughed. Now 4 months later and no longer on ADT my breasts are about 4 times the size they were before I started ADT. Luckily I was always rather flat chested but I am concerned that they will continue to grow when I resume ADT. I would love to hear what others experiences have been with this rather sensitive topic. And yes now my nipples are very sensitive (sore to the touch).
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I was on ADT and Erleada for 13 months and I also had breast enlargement. I am not comfortable in taking my shirt off in public but I intend to swim in my own pool this summer. There are several cost in prolonging your life with this cancer and this is one of them.
Thank you for responding. If you don't mind me asking, could I ask you about other side effects you experienced while taking Erleada? Since I was on both Erleada and Orgovyx at the same time and both listed similar potential side effects I'm not sure if one had was effects than the other. I am also concerned that when I resume ADT the side effects will be cumulative. Meaning breast size continuing to increase, bone loss getting worse, muscle loss again, and the worst for me was joint pain.
I hope that your Erleada treatment was successful at keeping your PSA low for an extended length of time and that you are doing well. Unfortunately for me my PSA was only undetectable for 12 weeks once stopping ADT.
Robert, the side effects from ADT and Erleada were, increase blood pressure, bone and muscle loss, sleep disorder and foggy brain, mild depression, enlarge breast, weight gain . I started the Jansen Erleada clinical trial 30 months ago and I have been off of all meds for 17 months and my PSA has been .01 since RP in June 2022. The data on the clinical trial that I am in suggests that I might be EFS ( event free survival ) for 41 months from starting the clinical trial. Presently, I feel ok and today I celebrate my 77 birthday. I hope that you and I have a good and long run with this PC
HAPPY BIRTHDAY!!!!
Wishing you all the best!
My gynecomastia due to ADT is so pronounced that I covered my breasts in front of my wife of 41 years when I first noticed it. It’s the price of fighting this disease. Too many side effects from treatment. But we need to think about the alternative if we decide to take no treatment at all.
Gynecomastia is a common side-effect of ADT. There are some treatments that can help.
Here is an article describing the 2 options: Short course of radiation or tamoxifen.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7305090/#:~:text=A%20common%20side%20effect%20of,or%20breast%20pain%20(mastodynia).
Thank you for your comment and for the the link.
I still have not been able to find any information on side effects of intermittent ADT and if the side effects are the same the 2nd time as the 1st round of ADT. Are the side effects are cumulative?
I believe they are cumulative though I am certain that they don’t always occur. I saw no breast increase while on a 6 month stint of ADT for a 6 week radiation course. I also did not see a breast size increase on my first year on intermittent ADT. Rather, my first experience with breast size was restarting ADT after an ADT vacation. I’m not clear that there was a causal relationship but due to some communication issues I had a longer session of Cassodex before stating Lupron that time.
Regardless, I complained and got a couple of doses of radiation to my chest which seems to have arrested (not reduced) my breast growth. In the words of the radiation oncologist “we’d like to keep your cup size smaller”. I haven’t seen any additional enlargement for 3+ years.
This was at UCSF.
Thank you so much for sharing your own experiences.
I was only on ADT for 24 weeks (Erleada and Orgovyx). Unfortunately PSA started climbing within 16 weeks of stopping ADT. And now my PSA has gone from 0.08 to 1.02 within the last 12 weeks. The good news is that all scans were "stable" and the PSMA/PET did not show any "aggressive PMSA avid lytic/blastic osseous metastasis." I have had RRP, 34 rounds of salvage radiation, a metastatic lymph node in my chest, 5 more rounds of radiation and 2 drug ADT as part of a Clinical Trial. All of that within the last three years. For now I am grateful. I am feeling well. I have regained my strength, my body hair has regrown, and the sever joint pain has subsided. My next visit with the oncologist is a couple months away. In the mean time I will try to prepare myself mentally and physically for the next course of treatment.
I'm in my mid-70s now, and life's been a rollercoaster lately. Since September 2022, I've been on this medication cocktail of Zoladex (Goserelin) and Abiraterone, but I can't quite figure out which one's causing all the trouble, or maybe it's both of them ganging up on me. Around 6-8 months into the treatment, things started getting funky. I've been shedding body hair like a golden retriever in summer, and I've even started growing a pair—albeit a modest one, around A cup-size, if I were to guess.
Fatigue hit me like a ton of bricks, and it feels like my muscles are playing hide and seek, with about 20-30% of them seemingly gone missing, while my tummy's decided to throw a party and gain about 4 inches uninvited. As if that wasn't enough, bone and joint pains have become my new companions, and to top it off, I'm one of the lucky few dealing with the long-term consequences of the radiation I had to endure a year back—hello proctitis!
But you know what? Despite all of this, I'm still here, kicking and savoring every moment life throws my way. Because hey, being alive is a gift, and I'm not letting a few bumps in the road steal my joy. Keep smiling!