Why are hormone therapy side effects so hard to manage after mastectomy?

Hormone therapy side effects can be particularly challenging because these medications work by blocking or reducing hormones that may fuel certain types of breast cancer, which can affect many body systems and cause symptoms like joint pain, fatigue, and bone density changes. The frustration with trying multiple medications while dealing with ongoing side effects is completely understandable, and many people in this community have faced similar struggles with finding the right balance between effective treatment and quality of life. Consider having an open conversation with your oncology team about your concerns and exploring all available options together, as they can help weigh the benefits and risks while addressing your specific situation and preferences.

Dear Cassandra — I’m a male prostate cancer patient, 3 years since diagnosis, so I’m certainly not a “match” in terms of cancer type. But I am a match in terms of the travails you describe, with multiple debilitating and discouraging medications and tests and procedures. In that regard, I suggest you seize control of your treatment and make it what you want. Contrary to the advice of the Community AI Agent, I suggest that you NOT have a conversation with your oncology so-called “team,” something I’ve never seen and in the real world doesn’t exist. They will not weigh YOUR benefits and risks, but theirs. They cannot address your specific situation and preferences, because it’s doubtful they know much about you. What I realized (too late) that I had to do was “know more than my doctors” about me and my cancer. How? Two ways: 1. Read everything about your specific situation in professional medical journals. This is a forum in which doctors must reveal all of the downsides and debilitations of the treatments and medications they recommend, usually without due regard for harmful so-called “side” effects. 2. Read everything on Outcomes4Me—all postings and all comments, because patients have already gone through what you’re going through now. It’s a long and arduous slog, but I’ve found it’s worth the effort. If nothing else, you gain power by being in control of your situation, rather than robotically accepting what others—who have THEIR best interests foremost—tell you. Yes, they can advise, and yes, you should consider. But they are not God, and you are an autonomous, rational human. And you’re the only human capable of deciding what’s right for you.

Dave S, Blessing to you.. this is exactly what I needed to hear. Yes, I will seize control of my treatment. You helped, Thank you. Cbk

David - great response! Well said! I hope many people come across this! Blessings to you both!

THIS is long but i need some opinions, please! I'm 72 and just got diagnosed with Adenocarcinoma in the right lower lobe of my lung, stage 2A, with no lymph node involvement. I am scheduled in 2 weeks for the removal of the lobe. They will test any tissue or lymph nodes around the site by pathology to make sure they have resected to healthy tissue. They tell me it will be a very painful, long recovery from the surgery. My question is, after researching about the type of cancer I have, the probable next step is chemo and/or radiation to make sure no cells have metastasized. I had ct scans. A PET scan, and brain MRI. I have no brain cancer, and my pet scan didn't light up anywhere but the bottom of my lung. I am a retired register nurse. I have treated countless patients that have gone through chemo and/or radiation therapy. These treatments produce terrible side effects and adverse reactions. I have seen the consequences of these effects on the young and old alike. However, the older ones, like myself, never seem to bounce back from the treatments and have no quality of life, just maybe more time. I have always stated that given the choice I want quality of life over quantity. I've agreed to the lobectomy because I believe I can recover from that and have the same quality of life. However, am I wrong to not want the chemo or radiation afterwards? I reason that if they remove the lower lobe with very early stage cancer, and there is no lymph node involvement that the cancer should be gone, at least for the time being. And that is enough for me. I may have years left even if it comes back, but I have no adverse reactions and side effects? I have discussed it with my only daughter and my grown grandson, and they said that it was entirely my decision. I guess I'm asking what those of you in treatment think of the side effects of the treatments at my age. Would I have any enjoyment of life?

I had triple negative breast cancer 8mm margins clear all the way around excised tumor and no lymph node involvement. No chemo for me. My decision. Whole breast radiation for 20. That’s it. Active surveillance after that.

Dear Debra S — See my response to Cassandra above for my background story. I fully understand and support your questioning of more aggressive, invasive, and potentially harmful treatment. Same goes for your sensible and enlightened choice of quality of life over quantity, which so-called “care” teams are literally dead-set against, since they can’t do more treatment if you’re dead. I have thus far made two choices that raise my risks and lower my life expectancy. Both of these choices boosted my quality of life and both were unanimously opposed by my care team, which means no insurance coverage and full pay out of pocket. But well worth it to again feel like living and stop recurring suicidal thoughts. Best wishes and please keep posting!

Cassandra, 5 years ago my husband took me to the hospital because I wasn't making sense and was acting weird. I had a 2 inch tumor in my left front temporal area. I also had a 7 cm lung cancer tumor in my right lung 3rd lobe. So, going in with stage 4 lung cancer that had metastisized to my brain. I am currently a 69 yo white female. Once cancer has spread outside of the lung they can NOT get rid of it with surgery. The Brain: Surgery to remove 2 inch ENCAPSULATED tumor. Then I had to have radiation to my brain to insure the cancer was gone by a process know as Gamma Knife radiation. They screwed this wooden box form into my skull in 4 places, then the physics kicks in - exact measurements so no good brain tissue is hit. The body: I went thru 48 rounds of radiation, 8 months of chemo therapy, then I CHOSE to do a year of immunotherapy with a drug infusion called IMFENZI. This drug "unmasks" cancer so your own immune system can now "see" the cancer cells and destroy them. I Felt better on this drug than I had felt since I got the diagnosis of cancer. You then get what I call the three Month crazies, and later, the six month crazies. Here in the USA the first two or three years you go for scans every 3 months. The build up for these test results will make you crazy! Later when they're every six months you still get the crazies. I personally would never take a drug named Keytruda. They say it's good for dozens of types of cancer, however, the side effects are crazy, and I was not prepared to take those chances... My point is, YOU are in charge of your care - Doctor's can recommend what they believe to be the best course of attack, but do your research and Get second opinion. You can start a procedure and if it's too much, stop doing it. Lastly, think ONLY positively - your body believes what you tell it, make sure you tell it, and believe it, that your cancer is gone and is not coming back. If you believe in a higher power, 🙏 pray and be at peace. Stress can be very bad for cancer. Talk with a therapist, get on a low dose of Xanax like .25 or .5 It's not enough to knock you out or anything like that. It just helps keep you on an even keel and lessens your stress level. Good luck to you Cassandra - don't let anyone push you to do something you don't want to do.

I'm going through the same thing. I been on two of them and quit for the same reasons. They want me to try a 3rd. I don't want to do them. The quality of life is more important since I'm 74 and had a double mastectomy in January.

It appears that so far I’m the only male on this thread, so I have this to say: All of you ladies are totally on target! Taking control of your lives … researching your alternatives … objectively examining suggested procedures, treatments, and drugs … and, most important, recognizing that in all instances the decision is yours, whether or not that’s consistent with standard practice and conventional medicine.