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atypical lobular hyperplasia
YC719
2 Posts

I've been diagnosed with atypical lobular hyperplasia recently and my specialist recommended that I get a surgery to remove the cyst and check if it's cancer or not. But it won't lower the risk for breast cancer even though it is a benign cyst for now. I have no idea if I should get a surgery and it is bothering me………😓

3 Replies
Runner Girl
2044 Posts

Hello @YC719

Welcome, I'm sorry for your diagnosis. I was also diagnosed with Atypical Lobular Hypoplasia - when I went for my baseline mammogram at age 40 (I'm 55 now).

I had mine removed. It was non-cancerous but my research led me to learn that if left unchecked it can become cancerous down the road. I could not live with that so deciding on surgery was easy for me. 12 years later, (at age 52) I was diagnosed with invasive ductal carcinoma in the other breast. I had a lumpectomy, chemo, radiation, etc.

Have they given you the option to remove or monitor and if monitoring how often will you have to have a mammogram to keep an eye on it?

Here is a link to the Mayo Clinic information on ALH - https://www.mayoclinic.org/diseases-conditions/atypical-hyperplasia/diagnosis-treatment/drc-20369778

Runner Girl

YC719
2 Posts

Hello @Runner Girl shout out from Toronto 🙋🏻‍♀️and thank you so much for your informative reply. Yes they recommended to remove it or I can have a mammogram six months later but I rather monitoring by mammogram. I am wondering what are the side effects of Tamoxifen?

Runner Girl
2044 Posts

Hi @YC719

Hello from Calgary!

Tamoxifen - I spent 2 years on it. Everyone will have different side effects as our bodies are all different. I had hot flashes/night sweats and terrible lower body pain. I was able to manage the pain with acupuncture. One treatment every 3 weeks kept me pain free. When Covid caused the shut down I was suffering greatly until I could get back into my acupuncturist again.

Here is a link to breastcancer.org information on Tamoxifen: https://www.breastcancer.org/treatment/hormonal/serms/tamoxifen

Runner Girl

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