Has anyone stopped taking tamoxifen due to side effects?

Many people in this community have faced similar challenges with hormone therapy medications and their side effects. It's completely understandable to have concerns about how treatment affects your daily life and well-being. Consider discussing your specific side effects with your oncologist, as they may be able to suggest ways to manage them or explore alternative treatment options that might work better for you.

Im curious about the same thing. I’m 8 months in. It’s a struggle. Some side effects take some getting used to. Some have yet to fully manifest. I’m worried I can’t deal this for the long haul.

I am on Letrozole. The side effects make life a struggle. I meet with my oncologist next month.

Even though I had bilateral mastectomy on 3/4/26 I will start tamoxifine for stage 1 invasive ductal carcinomain in May or June. I am worried about side effects because I am a Traumatic Brain Injury survivor and neurodivergent which resulted in an extremely negative experience with first oncologist. New Appointment with a different oncologist is scheduled for April 23rd. What questions should I ask?

My name is Michael. I’m a male that’s been diagnosed with breast cancer one out of 1000. They’re telling me. I started to tamoxifen after a mastectomy and right now I’m having major back issues that are going into my hips. They stopped the tamoxifen for a while to see if that helps it.

Michael i tried going down to every other day but the back pain and hip and ankle pain was too much to deal with on a everyday basis. Especially working in a warehouse and being on your feet all day. I just quit taking it all together starting to feel better.

I opt out on the tamoxifen because I did my research and found so many side effects, I was diagnosed with DCIS in situ last April had a lumpectomy, 20 rounds of radiation and now the dreadful pill.. I advocated for myself and told my doctor I didn’t want tamoxifen you would of thought I had 5 eye balls the way him and the nurse looked at me I knew my cancer was stage 0-1 I knew it was curable I read asked questions and did what I thought was best for me and my body. He ended up putting me on Anastrozole right before I had a full hysterectomy as another preventative, but by month 2 my side effects were so severe painful joints my bones were screaming I told my oncologist this and he had me stop until my next appointment and I’m sure he will try to push another pill on me.. I asked my oncologist if he over treats patients like myself? Of course he said no but I went through so much and what I don’t understand is it just protocol to prescribe an AI or is it necessary? No I don’t want my cancer to come back No I don’t want to go through this again but I’m more concerned about my quality of life I don’t want to live in pain for the next 5 years mind you I’m 43 years old, I believe I did what I had to do to make sure that I took care of my cancer but is it necessary in every case to prescribe an AI? So I’m going to keep educating myself and advocating for myself praying over it and making my own decisions because I don’t think that doctors are always right and my quality of life is more important to me than pushing through side effects that make me feel awful. My best advice to anyone who is going through this is to educate yourself, ask questions, pray about it and listen to your body God will help you make the right decisions for you. My doctor installed fear in me told me if I didn’t take the medication that it would come back and I would die. How would he know this I believe everyone has a different diagnosis and mine was such a low grade stage so I am just going to continue doing what I’m doing in hopes that it doesn’t come back. Good luck to you all and God bless you all on this journey that never seems to end..

They switched me from tamoxifen to anestrozole & now to letrozole because of all the side effects I was experiencing (hot flashes, weight gain, depression, body aches, fatigue)

I am right there with you on the side effects. I’m on Letrozole. Easter night was so bad I did not take it the next day or today. I’ll see if I sleep (with a sleeping pill) tonight then decide tomorrow. My appt. with the oncologist is in two weeks.

I'm very glad my oncologist was very understanding and took my option seriously. I will just keep up with my mammograms and watch closely. Don't be afraid to speak up for yourself you know your body best.

Kathleen if you are comfortable with sharing what your diagnosis is? I really want to opt out on any of the medication I have taken Anastrozole now for 3 months and I couldn’t handle the side effects extremely painful my bones were screaming so my oncologist told me to stop taking them but I know when I see him again in a few days he’s going to persuade me to take another one.. I don’t want to go through what I went through again but I also don’t want to feel like crap everyday either I want my quality of life back I am 43 years old and had DCIS in situ contained in my milk duct stage 0-1 I had a lumpectomy, and they told me I had a few “active” cells so I had 20 rounds of radiation and since it’s hormonal cancer I decided to have a full hysterectomy a few months ago I believe that I had it removed, had it radiated to kill any “active cells” and because it’s hormonal I eliminated that by having a hysterectomy so I feel confident that I did what I needed to do to remove all my cancer cells I also believe that doctors are not always right, and when I asked my oncologist if they over treat of course he said no. I have done my research and have actively been advocating for myself I asked my oncologist what if I don’t take any of the medications? He said “either way your stuck with me for 5 years” and when I said I didn’t want to take Tomoxifin both the nurse and my doctor looked at me like I was crazy, one nurse even said “just so you know, if you don’t take it, I will see you back in my office” (great bedside manner)… I really don’t want to take the medication due to the side effects but doctors have installed fear in me so I’m afraid if I don’t my cancer will come back. Any suggestions? Thank you for listening God bless

Michael, February 2025 I had no idea I had breast cancer (Stage 4) but 2 vertebrae dissolved. After surgery to remove a large tumor on my spine, I had 5 radiation treatments. Then I was given Letrozole (which I’m still taking) Ibrance (dropped my white count very low) Verzinio (made me feel awful) and Kasqali (first 400mg then dropped to 200mg, again affected my white blood count). I feel better and have more energy. It’s difficult to go through the process, but I pray your oncologist will keep working to find the best treatment for you. Remember- take one day at the time - God has a plan for you.