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Real members of MyBCTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyBCTeam Member asked a question 💭
Chelsea, MI

Meeting with MO for first time next week and preparing my questions- been reading a lot here and online about this pill and have serious concerns. Temporary side effects are acceptable to me but cancer causing is not- just wondering if this is a small percent or not so thought I would ask you wonderful ladies. I realize your individual benefit vs risk has to be calculated. Primarily looking for long term experience with this drug- Anyone been on this for at least 5 years and care to share? Of… read more

December 4, 2015
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A MyBCTeam Member

@A MyBCTeam Member - my gynecologist gave me great advice "The choice is yours. Make one which you will not regret and question down the line if BC comes back and you sit there and ask yourself "if only I had done....""
I have gathered all my data, had my surgeries, changed my diet, increased my exercise, and have decided to not take any meds. I have the support of my GYN and surgeon, as well as my husband. For me, it came doe=wn to quality of life, or as my surgeon summed it up - what's the point of being miserable but cancer free because of medication when the probable risk is low, or being pain free and living a healthy lifestyle and taking other pro-active steps to minimize risk.

December 8, 2015
A MyBCTeam Member

I took it for 18 months with no bad side effects - that I could feel - but it was thickening my uterus and luckily I caught precancer cells before they turned and had a hysterectomy. They tell you to report any mid cycle spotting while on tamoxifen. Even though I had been spitting mid cycle for years before BC, I didn't mess around. I went in as soon as it started and sure enough I had hyperplasia and the bad kind. I got lucky. If you go on it insist in on an annual uterine ultrasound. Stay ahead of it. It's a rare side effect but I'll here to tell you it does happen.

December 5, 2015
A MyBCTeam Member

I took Tamoxifen from September 2013 to June 2015. Initially I had few side effects but they increased and worsened over time - hot flashes, night sweats, joint pain, inability to loose weight, insomnia. I quit in June for what was supposed to be a summer break. My side effects went away quickly and I lost 10 pounds!
In September I had my hormone levels checked (E2 & FSH) to see if I was menopausal yet (i'M 52) and was nowhere near that. In October I had my ovaries and tubes out and have had very few hot flashes or night sweats since and no other menopause symptoms. I am not taking any meds right now since my surgeon and I have agreed that quality of life is more important than being medicated and miserable to avoid a possible reoccurrence.
My oncologist is much more pessimistic and REALLY pushes the meds.

December 5, 2015
A MyBCTeam Member

I am 44 and my MO recommended Lupron injections bi/monthly and daily Arimidex which is supposed to be for post menopausal women.

December 12, 2015
A MyBCTeam Member

Hi...so I don't have years experience to draw on here but wanted to share some factual information. Tamoxifen suppresses estrogen in breast tissue but it does have a low risk of uterine cancer. AIs(if you are post menopausal) suppress estrogen where it is produced, so everywhere in the body, and there is no increased risk for uterine or any other kind of cancer with their use. If you are not post menopausal there is an option to be put on ovarian aupression(Lupron or the like) so that you can take An AI. The downside of that is an increase in risks of osteoporosis, which is easy enough to monitor if you dr does a baseline bone density test. If you haven't already, Google SOFT study, not sure of your age but if you are under 35, studies have shown that ovarian suppression and AI use provided the lowest recurrence rates in premenopausal women. Good luck!

December 6, 2015

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