Tamoxifen scares me

Hi Dink40

We are sorry that you had to join us, but glad you found this community. It is a difficult decision. Sometimes getting a second opinion might be helpful. Anyone want to share their experiences and thoughts on this ?

With DCIS only, the main benefits of tamoxifen are to prevent a local recurrence and to prevent a new breast cancer. This is as opposed to when there is invasive cancer and it is also used to prevent a distant recurrence (aka metastasis) which is impossible with pure DCIS.

What you really need to know is what your risks of each of those things (local recurrence) and new cancer are and how much they would be reduced by Tamoxifen (it’s usually 45% of your initial risk). Also helpful is to know if you are at any special risk for the more severe side effects of Tamoxifen (uterine cancer and blood clots - both of which are incredibly rare in the absence of other risk factors). The side effects everyone complains about (e.g. hot flashes) will go away when you stop taking the drug, so it is possible that you can do a trial run and if it makes you miserable, go ahead and stop taking it.

I have been on it for 2.5 years and while I do complain a bit about some aspects (mostly hot flashes) it really has been quite tolerable for me. And in fact, having had some peri-menopausal symptoms of breast tenderness, mood swings and frequent heavy periods prior to starting it, I am pleased to say that the Tamoxifen has gotten rid of all that, so I actually feel better on it than I did before taking it.

As to your friend’s “hormones” having cause another breast cancer, as a previous poster said, Tamoxifen is actually a hormone blocker, not a hormone, so you might want to confirm what your friend was taking before you let that influence your decision. You will hear a lot of negative things about Tamoxifen on line, but that’s because the people who are tolerating it well (probably the vast majority in my experience) don’t bother to post about it, so keep that in mind as well.

I just finished my radiation therapy and am supposed to start tamoxifen on December 1st. I too am struggling with the idea of taking tamoxifen because of the menopausal side effects of it. I'm afraid it's going to age me; thinning hair, weight gain and all the other fun things that happen with menopause. One person said that tamoxifen makes you old. Also, I read an article that said by tamoxifen inhibitng ER+ cancer cells, it then leaves the door open for ER- cancer cells. ER- cancer is more aggressive. I have been thinking about skipping the tamoxifen and instead just changing my lifestyle...healthy foods and exercise and maybe less red wine. I wish there were more dcis stage 0 and low grade diagnosed women telling their story about not taking tamoxifen and having no recurrence. My oncologist said he would recommend tamoxifen to his own family. He said my risk for recurrence with it was 7.5% and without it 15%. I'm wondering how many oncologists have said there was no need for it.

Hoping women will share their stories,

Risa

I skipped the AIs (not Tamoxifen, as I was post-menopausal). I did this because my recurrence chance (even with a microinvasion) was in the single digits, and because of all of the reasons you have stated. I can live with this. That said, I was 56 at diagnosis, and my children were grown. If I had been much younger, or had young children, I probably would have tried the anti-hormonals and given it a chance to see if I could live with the side-effects.

The side effects of letrozole have not been too bad for me. I have some joint pain especially if I have been sitting for a while. Usually goes away once I am up and moving around. I have gained a few pounds, but then I haven't been trying as much as I should to lose I do have the occasional hot flash, but less than one a day so not bad at all. No hair thinning. I don't know about bone loss, I haven't had a DEXA scan since the baseline when I started taking the letrozole, will probably get one this year.