ADT/breast pain or breast enlargement

califvader
califvader Member Posts: 108
edited March 2014 in Prostate Cancer #1
would some of the panel members please share with me their experiences with breast pain or breast englargement while taking lupron. i have talked to some men that only had a small increase of breast size while others have gone as far as surgicial reduction.
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Comments

  • Mark58
    Mark58 Member Posts: 41 Member
    Lupron Problems
    My experiences (visible and felt) so far with Lupron are loss of libido, hot flashes and a small amount of weight gain. I have experienced no breast enlargement. I will get my 5th (4 month) injection next month. I'm not sure how much longer I can stay on Lupron as my PSA has started to rise again (now at 4.64). That was in October. I'm anxious to see what my PSA is next month.
  • Trew
    Trew Member Posts: 932 Member
    I only was on Eligard for
    I only was on Eligard for one year- stopped back in April. In Decmember I started noticing a pain in the right breast about the nipple. To me it feels like a soft lump that is tender to the touch. That is what I am experiencing right now. I did have some swelling of breast tissue on the Eligard.
  • califvader
    califvader Member Posts: 108
    Trew said:

    I only was on Eligard for
    I only was on Eligard for one year- stopped back in April. In Decmember I started noticing a pain in the right breast about the nipple. To me it feels like a soft lump that is tender to the touch. That is what I am experiencing right now. I did have some swelling of breast tissue on the Eligard.

    short term vs long term
    what do you think about this subject. s/t vs l/t hormonal treatment. long term treatment i would think would have longer lasting side effects. you can take treatments in 1, 3, and 4 month injections. is that correct?
  • jimekrut
    jimekrut Member Posts: 19 Member

    I am in my second month of Orgovyx and concerned about breast enlargement. Anyone here have experience taking Tamoxifen for this during hormone therapy? Dr. Scholz mentioned "Femora" in a video but I haven't found it online. I understand the enlargement is irreversible (other than with surgery) but progress can be prevented chemically. Thanks for any insight!

  • swl1956
    swl1956 Member Posts: 216 Member

    Yes, I too have been worried about gynecomastia from ADT. What I've been reading indicates that it can be prevented by using Femara (Letrozole), Arimidex (Anasrozole), or Soltamox (Tamoxifen). Not sure if one is better or if one of these needs to be taken prophylactically or can be administered if and when any symptoms start to arise? I would recommend speaking immediately to your medical oncologist if any symptoms do arise. From what I've read, once the breast tissue is formed it can not be reversed with the above treatments. You would think the urologists and medical oncologists would discuss these meds prior to ADT. Mine did not. I've been on Orgovyx for several weeks and so far no signs of breast development, but I'm going to have this conversation with my MO when I see her in a couple weeks.

  • jimekrut
    jimekrut Member Posts: 19 Member

    Thank you for the drug names! I was looking for Femara without success. I just sent a note to my urologist asking about the effects of Letrozole or Tamoxifen while taking Orgovyx (started about six weeks ago). At 73, I'm juggling more medications that ever before, and not all of them play well together!

  • swl1956
    swl1956 Member Posts: 216 Member

    The more I read it seems like tamoxifen is a good choice, but that's just from my internet searching. I hear ya on the pill juggling. I'm 68 and up until just recently never took any meds other than occasional aspirin. The orgovyx once daily is not so bad, but in a couple weeks I'm supposed to start on Zytiga which is 4 pills along with one prednisone and your supposed to take them having no food for two hours prior and no food one hour after. I'm going to ask about Nubeqa which doesn't require prednisone and has less side effects. Along with pills and a low gas diet required for radiation therapy (8 weeks of) It's like a full time job keeping up. They want me to lift weights too! and I'm still working, but I think retirement is in my near future. Too much stress!

  • Josephg
    Josephg Member Posts: 500 Member

    Please confirm the before and after eating restrictions on Zytiga. I was on Zytiga for 2 years under the oversight of a Medical Oncologist at a world renown cancer center, and I never had those eating restrictions with Zytiga.

  • jimekrut
    jimekrut Member Posts: 19 Member

    I have weekday exercises at home, but not weight training, so I took my free senior "Silver Sneakers" card to the local YMCA and am planning to start weight training there a couple of times weekly. I think regular work might be a good distraction, but retirement has real scheduling advantages.

  • swl1956
    swl1956 Member Posts: 216 Member
  • jimekrut
    jimekrut Member Posts: 19 Member

    From www.zytiga.com "Follow Your Doctor’s Instructions
    Take ZYTIGA® tablets as a single dose one time a day on an empty stomach. Do not eat food 2 hours before and 1 hour after taking ZYTIGA®. Do not take ZYTIGA® with food. Taking ZYTIGA® with food may cause more of the medicine to be absorbed by the body than is needed and this may cause side effects. Your healthcare provider may change your dose, if needed.
    Also, take your prednisone exactly how your healthcare provider tells you to. Do not change or stop taking your prescribed dose of ZYTIGA® or prednisone without talking with your healthcare provider first."

  • On_A_Journey
    On_A_Journey Member Posts: 147 Member

    @jimekrut and @swl1956, I have some strong opinions about hormone therapy induced gynecomastia that are not always popular, but please hear me out.

    I'm not on ADT but I have done plenty of research in anticipation. Personally, I'd rather look like Dolly Parton instead of going through unnecessary treatments because of vanity. I have moobs anyway, which I totally accept, and it is more common the older you get due to the natural hormone imbalance from reducing testosterone levels that comes with aging. ADT just speeds up the process, but you might be surprised to learn that classic LHRH Agonists such as Lupron only result in gyne for about 20% of users (anti-androgens are a different kettle of fish, with gyne occurring in around 80% of cases). I'm not sure what the % is for Orgovyx. But look at any 70yo guy walking topless along the beach; chances are he isn't on ADT but he should be dressed more modestly anyway. Boobs happen.

    True gynecomastia will result in pain, tenderness, irritation etc. but it will also let you know what 50% of the world's population deal with, generally without complaint. It might also result in major growth, but this is rare. Tamoxifen is effective with dealing with growth symptoms apparently, but guess what its side effects are - headaches, nausea, hot flashes, skin rash, fatigue, sexual dysfunction, weight and mood changes - the same as ADT, but in addition to it! No thanks!

    I sometimes notice a particular elderly guy at the shops, he has pendulous breasts which he tries to hide by walking in a stoop and by wearing excessively baggy t-shirts. All he does is draw attention to himself as they're banging together! What he really needs is physical support. There's no shame in it; it's only fabric.

    Anyone who, in their senior years, thinks that they have to keep proving that they are a man by having a body that they think society expects from them, is wasting their time. Again, it's just my opinion, but we're better off accepting our breasts if we have them, whatever their cause, instead of unnecessary drugs or surgery.

  • jimekrut
    jimekrut Member Posts: 19 Member

    My doctor has not seen gynecomastia for patients using Orgovyx and the manufacturer lists it as a side effect for <10% of users, so I’ll wait for now and work on weight control more vigorously.

  • Josephg
    Josephg Member Posts: 500 Member

    I follow my Medical Oncologists instructions/recommendations, and not a supplier website. If you are that concerned about what the supplier's website says, simply take your Zytiga at night, just before going to bed, and you will be basically compliant with the website.

  • Josephg
    Josephg Member Posts: 500 Member

    I'm with you on this. I have boobs from Lupron, and while sensitive at the beginning, they lost that sensitivity within a few months. I don't try to hide them, as IMO it is pointless to do so. The most important thing is that I'm still alive and enjoying quality of life.

    I have 2 dear female friends, who I met at the IMRT radiation center, they both had breast cancer, during my first series of radiation treatments, and we have met for lunch every quarter for well over a decade. Our first topic of conversation at each meeting is how we are progressing and feeling on our cancer journeys. I can tell you that one of them was on Tamoxifen for 5 years and the other one was on Tamoxifen for 10 years. I can also tell you that they experienced that exact same side effects on Tamoxifen as I was experiencing on Lupron.

  • swl1956
    swl1956 Member Posts: 216 Member

    Yes, probably not that big of a deal to be compliant. My Medical Oncologist did articulate clearly to take it at least 2 hours after food and then no food for an hour afterwards. I'm thinking maybe early morning a couple hours before breakfast.

  • swl1956
    swl1956 Member Posts: 216 Member

    Hi On_A_Journey,

    I respect you opinion and for the most part agree. Perhaps it's a little bit of vanity with me, but mostly I find the entire demasculation results of prostate cancer treatments unsettling because it's such a radical change from who I have always been as a man. I also don't like taking pharmaceuticals and never have until my metastatic Pca diagnosis. So, less would definitely be best. I believe however it's still wise to research our options. My Radiation Oncologist wants me to add FlowMax to my mix of Orgovyx and Zytiga with Prednisone. I read the FloMax and Zytiga may not play well together? All of this stuff is scary! 😫

  • Old Salt
    Old Salt Member Posts: 1,611 Member
    edited February 15 #19

    Just try to get rid of this idea of demasculation due to treatment. Many forum members who have undergone treatment of one kind or another (including me) are alive and doing reasonably well and enjoying their lives. Isn't that what matters?

  • swl1956
    swl1956 Member Posts: 216 Member

    I'm trying Old Salt! Just saying it's hard to let go of what was and is more difficult to accept the uncertainty of things that may be coming. I'm guessing most men navigate through these feelings early on in their Pca journeys. Sometimes, I scold myself for being selfish when I think of so many that are far worse off than I am. I'm glad you're enjoying life and hope I and others will be as fortunate going forward after treatments.

    Speaking of hormone therapy and breasts, I think my lack of testosterone is making me more emotional. I'm hoping I won't start wanting to wear a dress. Lols! 😀

  • On_A_Journey
    On_A_Journey Member Posts: 147 Member

    Phew, I'm glad that my opinions were taken at face value and didn't come across as insulting or anything like that, because it wasn't my intent to upset anyone.

    Yes, the prospect of radical changes can be unsettling, I totally understand that. But life itself is far more precious.

    I'm a bit 'different' to most men in that I am not compliant with gender stereotypes. I'm not transitioning or queer or anything like that, but I suspect that compared to most blokes, I'm a bit gender blind. Whatever changes occur to my physical attributes in the future, I'm already comfortable with. Plus, as red-blooded men, we know that boobs are fun to play with. 😉 What's wrong with doubling the pleasure? 🤣