I was diagnosed with early BC in February. It was mainly DCIS but with a tiny 1.5mm patch of invasive cancer. It was surgically removed and I had no lymph node involvement. I also had radiotherapy. I was then discharged and put on Tamoxifen. But within weeks of taking it I started with vaginal atrophy symptoms. Just horribly uncomfortable + cystitis + wanting to pee all the time. I contacted my oncologist for advice and he admitted Tamoxifen “was of very little benefit” for me. Infact, the difference between me taking Tamoxifen Vs Not Taking, is actually less than 1%. Yep, less than 1%!
I don’t know why I’m even taking it? It’s causing these horrible side effects + the added increase of heart disease, stroke, dementia etc - all for the benefits of a fraction of 1%.
Should I just stop? I’m so conflicted.
Hello Bluebella,
I hope that you are well and fine.
I was on tamoxifen for 7 months ( from Nov2019 up to May 2020).
The most significant side effect was hot flushes plus my endometrial thickness was increased till it reach to 13mm after 7 months and my oncologist admit to replace tamoxifen bu Aromasin.
You may make Ultrasound to check the endometrial thickness as it should not be increased too much.
I’m not recommend to stop taking tamoxifen till your doctor give you an approval to you to replace it.
Regards
Hi Bluebella,
Thank you for your post. This must be a really difficult decision to make for you. You may benefit from speaking to one of our clinical nurse specialists. They can offer support and advice either by phone or online. You can call them on 0808 800 6000, or alternatively. you can post to the Ask Our Nurses board.
Sending you our best wishes,
Saskia
Hi Bluebella,
I’ve just posted a very similar thread about this. Hope you can see it? I decided not to take Tamoxifen following Oncologist advice, but still wonder why there are such opposite approaches taken!
Shana72