Anyone else out there....decided not to take their Tamoxifen?

No because no matter how bad it makes me feel, it might just be what is keeping me alive and I just couldn't risk it!

Hi Tangandchris,

I took it for about 10 months and I quit taking it in June. I had all the "common" side effects, but the worse by far was the darkness (for lack of a better word) and the severe depression. I made myself get up and go to work and function because I had no choice, but it was one of the hardest things I have ever come up against. I just decided that life had to have more meaning even if I develop a recurrence of BC. I was/am on Zoloft and an anti-anxiety when needed. None of which helped while on tamoxifen.

Good luck

Tangandchris, at the time when your depression developed (or increased) did you talk to your MO? Maybe you could try a different antidepressant or anti-anxiety medication, or a higher dose. I've had severe SEs on Tamoxifen and my MO has been very helpful and supportive. He said that for me, if my current test at a half-dose doesn't work, he will be ok with me stopping because my cancer was grade 1 and node negative. He said though that he currently has a patient who had many positive nodes and she's struggling with SEs as well. He said they're doing everything they can to help her continue because the risk is so great. I wouldn't blame you if you find that you just can't do it, but it's definitely worth a try working with your (new) MO to see if you can find a way to decrease the SEs enough to stay on it. Good luck to you!

I lasted on Tamoxifen for about 18 months. It was more than 5 years ago, so I'm a little fuzzy on the details, but I simply couldn't foresee another 3+ years living like that. Darkness is a good word for it. I wish I could remember better whether or not I was still on Lexapro at the same time, but I sort of think I was. At the time I didn't have good contact with doctors (I had moved out of state away from my beloved OB/GYN and I had not switched to a local MO) so exploring options and doses of things didn't seem a great option. Flash forward to now: I was diagnosed in June with ER-/PR- stage IIA IDC. I suppose if it was hormone positive I'd regret stopping the Tamoxifen. But I also think that even the truncated course I took was helpful.

I chose not to take Tamoxifen for a variety for reasons: OC wasn't sure I needed it-she said there was an 80-85% chance I'd never have a recurrence even if I didn't take it, that surgery and RADS alone were enough for me and there was no guarantee Tamoxifen would work, that is if I were among the 15-20% with my stats that might have a recurrence, it only prevents about 1/2 of these expected recurrences. The possible side affects are pretty bad-so basically I couldn't see how anyone could call it either safe or effective, but lots of women do fine on it and because it does prevent about 1/2 of all recurrences we are talking about saving lots and lots of women just because so many of us are diagnosed with BC, but on the personal for me level, odds are I'll be fine w/o it.

My mother progressed to stage IV while taking tamoxifen and my OC declined to test me to see if I was a good metabolizer (inability to matabolize Tamoxifen tends to be hereditary) so I said thanks, but no thanks. Going with the big numbers, that 80-85% chance I've already done enough. Neither my BS nor my OC seemed to think ovarian suppression (premenopausal-barely-at time of diagnosis) with an AI was a good plan for me. BS in particular thought that was overkill in my case. I planned to get my ovaries out as hormone therapy with OC's blessing, but since I recovered from RADS in Feb, I've had my period only one time and if my ovaries aren't doing much of anything, I"ll just leave them alone.

I am now exercising (I was slug before BC), taking a variety of supplements and actively working on stress reduction and calling it good enough. I think we all do everything we can-for some it is exercise and/or diet or a pill a day or whatever) to prevent this from coming back, because no one wants to deal BC again, but I could not talk myself into taking Tamoxifen no matter how hard I tried.