Tamoxifen input

Posted by lovethedesert @lovethedesert, Jan 24, 2021

Hi All, it seems I'm getting Tamoxifen thrown at me from every direction. I'm still reluctant due what I read as side effects, short history again, partial mastectomy, stage one, in October, margins clear, lymph nodes clear, 79 years old, single, reasonably healthy except for crummy knees! What's your input? My oncologist which I finally got to see definitely ruled out chemo, said didn't think radiation was necessary, but felt to be sure no cells escaped that Tamoxifen was indicated. HELP, I'm a Libra and find decisions hard without much pondering. Thank you all my Cancer survivor Sisters.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

jdriver | @jdriver | Jan 25, 2021

Been on Tamoxifen since Nov 2013. Similar history except I had sentinel node positive. Had axillary node dissection and radiation after lumpectomy. Honestly have had zero side effects. I was 62 when diagnosed and 69 now. Plan is to stay on Tamoxifen for 10 years. You might try the tamoxifen and see if you can tolerate it. Some can and some can't. Guess I am one as the lucky ones. You can always quit taking it. Most of what I have read indicates the AI seem to cause more side effects. Good luck !

Laurie, Volunteer Mentor | @roch | Jan 25, 2021

Your situation sounds very similar to my sister with exception she is 63. Hers was stage 0 or 1, no spread, no chemo or radiation. She is going to try Tamoxifen and IF she has adverse side effects she will rethink.

I am 65 and had Stage 2 with lymph nodes involvement, lumpectomy, chemo and radiation. I tried 3 different Ais and had side effects and decided to not take after an in-depth discussion with oncologist about the percent of recurrence. Surprisingly, my chance of reoccurrence is lower than my sister. The reason is I had chemo and radiation to kill any cancer cells not removed as opposed to sister who just had the identified area removed.

I had another sister who also had stage 1 in her 40s. She did AI for 7 years without problems.

The advice I gave my sister is to try the AI, and she might not have any problems. If she does, then talk to oncologist about side effects and alternatives. Just like every drug, people bodies react differently.

You would think 3 women in same family having breast cancer would indicate genetic link, but two of us did genetic testing and no indication genetic reason.

Laurie

Langold | @rarelybees2889 | Feb 2, 2021

Are you trying the low dose option?

lovethedesert | @lovethedesert | Feb 2, 2021

they ordered 20mg is there lower? I still haven't taken it, just so timid about starting. Would lower mg help?

jocelynk | @jocelynk | Feb 3, 2021

I was just diagnosed with stage 0 DCIS and I’m on a low dose (10 mg, so half pill) until recheck in June, then double mastectomy. Some side effects at beginning but none now. Been on them since early December.

jdriver | @jdriver | Feb 3, 2021

I have been on 20 mg for 7 years...doing fine. I actually have heard of people on 40 mg a day.

polianad22 | @polianad22 | Apr 27, 2023

In reply to @lovethedesert "they ordered 20mg is there lower? I still haven't taken it, just so timid about starting...." + (show)

How are feeling? Did you take Tamoxifen?

jane2024 | @jane2024 | Jul 6 6:07pm

Hi I started Tamoxifen on May 10th this year. It has worked ok so far. I noticed some light bleeding today. Is that normal? I had thought there would be no more period when you are on Tamoxifen. Thanks for any insight.