Not taking tamoxifen??dilema

Tamoxifen I’ve only been on tamoxifen since the beginning of March 07 but so far I haven’t experienced any side effects, other than a few spots on my face for a few weeks after I first started taking them.
Spots are all gone now and I’m feeling fine.
Michelle.

I didn’t take it HI Sarah,
Just wanted to add my two cents worth. I was diagnosed with hormone + BC in 2002 age 29 and after my many treatments decided that I didnt want to take tamoxofin, I refused it as I was scared of side effects and wanted to preserve my ovaries for possible children. 18 months later I was diagnosed with secondaries to my bones, I don’t know if having taken tamoxofin would have made the difference but believe me living in hindsight is not a good feeling. Given my chance again I would take everything I could.
Its so hard to make these dreaded decisions but I would go with your gut feeling.
Lara x

deciding about stopping tamoxifen I’m almost 2 years a survivor and have been on tamoxifen about 1 year. I ran out of the script a week ago and while waiting on the new one to arrive I’ve nearly come to the conclusion that I don’t want to take it anymore. I’ve suffered major side effects, constant hot flashes ( the hair soaking type) every bone I have feels like its 90 years old when in actuallity only 46, I can easily sleep 12 hours a day, I’ve gained 30 pounds and even when I try my hardest I can’t loose a pound. In my cast I really feel the risk of not taking the drug is worth the hope of feeling like I used to!

Worth a try When I first had BC 17 years ago I took Tamoxifen for 3.5 years and then had to stop because of the hot flushes which were ruining my quality of life. My oestrogen was low - moderate. I was 51 and peri-menopausal which probably exacerbated the flushes. Now I have just had a recurrence in the same breast and am on Arimidex and the flushes are not so bad but they are still there. Also get headaches. Have stopped coffee, tea, anything spicy and only have an occasional glass of wine. Not sure if this is helping as it is still in the test stage but I do miss my morning wake up coffee! I tried everything to help the flushes when on Tamoxifen but sadly nothing really worked.
Probanthine did help with the sweating but makes your mouth dry.

Hi Sarah by now you will have made your decision but I’d like to say how much I wish I had the luxury of choice.My bc is triple neg so when rads finish tomorrow there is nothing to reduce the chance of recurrence.I’d do anything/take anything to keep the cancer at bay.I want to live.Val

I stopped tamoxifen last year i took it for about two and a half years but stopped because I had discharged myself from the hospital and my new GP refused to prescribe it unless I undischarged myself. I didn’t want to do this so that was the end of my prescriptions. She did write to the local hospital who said she could prescribe it without me going up there but by then I’d got used to the benefits of no hot flushes, bad taste in the mouth etc.

I had low grade cancer apparently so the benefit of taking tamoxifen was fairly low - it reduces your risk by half so if it’s low to start with it goes down by a fairly small amount, If your risk is high it is proportionately more likely to help you

mole

No Arimidex/Tamoxifen, etc. I took Tamoxifen and then was put onto Arimidex as post meno, I had bad side effects that really affected my quality of life. My Onc finally told me last Friday that I was not to have any hormone treatment, so no tablets for me. Apparently they would only make such a small, if any, difference in prognosis (I am only very mildly ER+), that it was not worth destroying my life for another 4 and a bit years!

So I will have to take a chance, but I would not have made this decision without consulting with my Onc team first.

Good luck with whatever decision you make.

Lynn