Anyone quit tamoxifen and not tell anyone

Oh, Nancy. How much weight have you gained? I'm about 10 pounds heavier than when I finished radiation. I weighed less this summer when I was swimming daily, but now that I'm back at work....I'm back to 155 lbs., which I hate. Still, I take my meds......

Aren't you post-menopausal? Could you ask your MO about AIs? I'm on Aromasin. It hasn't been a picnic, but I haven't gained THAT much weight.

Hoping you're doing OK otherwise!

Nancy so sorry you are going through this. Yes, anti hormone treatments do make it more difficult to lose weight in general. Some lose, but that's much less common. The SEs will mimic menopausal symptoms. Difficultly in losing weight is one of them. Talk to your doc. Hopefully he/she will work with you so you can continue some form of treatment.I think its sad that you feel you have to keep it a secret. IMO we should speak up! Maybe they will come up with some better tolerated treatment options. Good luck and keep us posted...

Nancy,

I'm jealous! You're 5'9"? And 145? Wow! I wish I were that tall. I'm 5'2". My daughter wishes that I had more height to add to the gene pool. She loves basketball but is only 5'6".

Vent away, girlfriend!

Quality of life is important. You can try taking Tamoxifen every other day. The one size fits all pill for Tamoxifen does not seem right. Women are all shapes and sizes.

I am Stage IV cancer, I took Tamoxifen as a treatment, not a preventive. I have been on many treatments, as you can see in my signature. My first treatment was Aromasin, and my tumors diminished considerably. The side effects were terrible. It hurt to pee. It hurt to get out of bed. I had to stop the Aromasin. Bummer. I couldn't take the drug that was keeping me alive. ; ( Thank goodness, my doctor was understanding, and we are trying other drugs.

It's not worth it to feel bad, after going through breast cancer once. Every one is different, but from my perspective, ladies, I didn't and wouldn't take something that made me feel miserable. If the breast cancer comes back, guess what? It's not the end of the world, and they will treat you with something else. I didn't take Tamoxifen after my Stage I diagnosis. My reasoning was, I would take it when I actually GOT cancer. And I did, and I was on it for a couple of years, and it worked great. Save the Tamoxifen for when you need it. If you take it as a preventive, you won't be able to take it as a treatment. That's my logic.

You can talk to your doctor, who will try to convince you to stay on it, and make you feel guilty, which you don't need. No one should be made to feel bad for not taking a drug that makes them gain weight and feel bad.

Wow, ozbell, thanks for sharing that. It sounds like both the treatments and the judgments have hurt you. Lot of misunderstandings in and outside of the breast cancer communityabout these very powerful drugs.

Yes we need to tell our docs about these SEs it isn't complaining it is reporting and that info needs to be collected by the FDA. I am not one to think of MDs as gods (just very smart people) so I speak up. Otherwise they tend to push people into the roads most taken and one size does not fit all.

The Onc and his nurse though were very quick to tell me to stop when I told them about the Tamoxifen (platelet drop, pain) and Fareston (uncontrollable crying, pain) so the judgement is more from family and self imposed guilt.

i just returned from my breast surgeon (check up- one year after bmx) and he said my chances of getting breast cancer are less than 1%. better than people who never had it. so why do i still have to take tamoxifen? is it really worth all of the side effects?