To take or not to take Tamoxifen

I had to suddenly stop taking HRT after 25 years. Then had a double mastectomy late in Sept 2025 followed by radiotherapy. Since stopping HRT and surgery I have very bad joint pain everywhere. I am 76 years old. I am concerned Tamoxifen will make the joint pain worse. My oncologist prescribed 20mg but I have not started taking them. I simply cannot tolerate being in more pain. How essential is it to take them at my age?

Hettybeer

Comments

  • abigailj
    abigailj Posts: 147
    edited March 1

    I had a DMX with immediate DIEP flap recon at 62 (5 1/2 years ago). I was also taking HRT (for 12 years) and had to immediately stop when diagnosed because cancers was strongly ER+ and mildly PR+ and HR negative. Because of COVID at that time, my surgery was delayed for a number of months so they put me on Anastrazole which is one of the hormone blockers more commonly given to post-menopausal women than Tamoxifen. The joint pain and other symptoms I experienced on it were awful. After my surgery the oncologist pushed me to try another hormone blocker (Letrozole) - I asked "what I are my odds of recurrence or metastasis if I take those pills vs. not taking them?" She said "taking them cuts the risk by 50% and is the standard of care". So I just told her I needed that data to make an informed decision about what I will choose to do since it's my body, my choice an she did give me the information. Because my tumors were relatively small and because my oncotype was low on both the IDC and ILC cancer sites, and because I do not have genetic markers like a BRCA variant (and maybe other data she had about me?) she calculated it as 3% if I take them vs. 6% if I don't. So I opted to roll the dice and not take them. My advice is to make sure an oncotype test and genetic testing was done for you and push the oncologist to tell you what your odds are with/without so you are in a position to make an informed decision about whether to take any hormone blockers or not. If your odds aren't favorable, there are many thread here about managing the side effects of hormone blockers, and in general keeping fit and mobile are key if you are able to do so from what I read.