Atypical Lobular Hyperplasia and Tamoxifen

Posted by arlaeliason4 @arlaeliason4, 1 day ago

I was diagnosed with ALH and have been told that my treatment should be Tamoxifen to reduce my risk of developing breast cancer. I do not have a family history of breast cancer. I have been reading about the risks of taking Tamoxifen. Could someone please help me decide whether or not to take it for the next 5 years? Has anyone that has atypical lobular hyperplasia been recommended this treatment? Thank you

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Chris, Volunteer Mentor | @auntieoakley | 1 day ago

Hello @arlaeliason4 I understand it is so hard to decide especially when you read social media, blog posts , Mayo connect, etc. and find a lot of negative side effects.
I can’t help you decide what to do, I can only tell you what I know. I did take tamoxifen after I finished chemo and radiation with my original diagnosis. The side effects were entirely related to the drop in estrogen, I certainly did not need anyone to test my estrogen levels. I was in menopause, hot flashes, were the number one complaint. Over the five years I also started to notice the drying and lack of elasticity in my skin, my hair went fully gray seemingly overnight. I felt like it was worth aging prematurely to avoid more cancer.
I can also tell you that roughly 80,000 cases estrogen positive cancer is diagnosed every year, and most of them are prescribed some form of endocrine therapy. The ones you see on every conversation are the ones having side effects they can’t abide. The folks who are just getting through it and living their life are not the ones you hear from the most.
You and your doctor should make this decision, if you don’t feel comfortable with what you are hearing from one doctor, a second opinion might be in order, if you get the same answer then at least you have a consensus.
I might also recommend connecting with the folks who have lobular breast cancer on those pages in connect. They are a really great group and might have more insight for you.
Did your doctor do any genetic testing of you or your biopsy to guide his recommendations?