I just don't think I can do tamoxifen.

Are you sure those symptoms were from Tamo? My doc told me 30 days before any side affect would show up.?? Just wondering

CAmommy,

I'm so sorry about the Tamoxifen SEs. That just sounds horrible. I know you have some family history of BC, but I really hope you aren't being scared into taking antihormonals by your doctor. I'm sure you're more up on the statistics than I am, but the one that really struck me is that yes, Tamoxifen reduces risk by half. From 2 to 1%. How's that worth all those side effects? Can you get a BRACA test? If you're negative, be done with that awful stuff.

Hi CAMommy,

I'm so sorry that you are experiencing such awful side effects with tamoxifen! I started taking it at age 45 and had a tough time the first few months. I second what odie16 said: my side effects subsided over time. They still would pop up from time to time, but they were not consistently bad like the first few months. Some people cut their dose in half when they first take tamoxifen and work up to the full dose. I was also offered either effexor or gabapenten to lessen the side effects, but didn't want to take yet another drug. By the time I was ready to try the drugs to treat my side effects, my symptoms lessened. I had IDC, so I don't know how I would have felt with DCIS. However, I also have a strong family history (although BRCA negative) and the Stanford genetics folks strongly encouraged me to take tamoxifen and even wanted my sister to take it although she has never had breast cancer. It may be worth sticking with it to see if your symptoms ease. Believe me, I would love to tell you to flush those pills down the toilet, but everything I've learned tells me that you should try to stick with it a little longer. Best wishes!!!

So sorry you are having such bad SE, CAmommy. I have also been trying to get actual risk numbers from my oncologist (as opposed to the "50%" thing) with no luck. Actually I can't even get a return call - asked the question via nurse almost 2 weeks ago (and it's the first time I've ever called with any question). The numbers have to exist, right? So why can't we get them? Very frustrating when you are trying to make decisions about your health. I hope reducing dosage helps you and that you get some good info soon

CAMommy I believe that if you aren't fully invested in your treatment, it's not going to help very much. I think starting with 1/2 or quarter of a pill and working up is a good idea. I've been on LOTS of oral treatments and I'm taking Tamox now as a treatment not preventive, and the gradual introduction of all my oral meds has worked for me. But if you are still having problems in a couple of months, DON'T TAKE IT!! QUALITY OF LIFE MATTERS.

I didn't take Tamox after my Stage I, didn't even try it, developed Stage IV 4 years later. NO REGRETS!!!! I WOULDN'T CHANGE A THING.

If you don't take anything now, and if you happen to have a recurrence, at least you have enjoyed some years without those terrible side effects. And they'll give you Tamox later. :-)

I feel so sorry for women who endured double mastectomies and chemo after a early-stage diagnosis, thinking they would be done with breast cancer. Go look at the Stage IV Discussion boards; look at the signatures of all the women. Those who have had their breasts removed, ovaries taken out, endured sickness and baldness from chemo -- and the cancer STILL came back.

I mean, come on, you are Stage 0 -- you deserve to enjoy your life!!!!

The oncology community has got to stop promoting martyrdom and overtreatment as the key to stopping breast cancer. It hasn't helped like promised and in some cases, chemo makes the cancer stronger.

Don't worry about what your doctor will think. it's what you think that matters most. (I told one doctor to please stop harassing me about taking out my ovaries. I'm post-menopausal now, my ovaries did not kill me when they were active. I survived!)

(BTW, do you know about fat grafting for reconstruction? I had excellent results!)