Atypical lobular hyperplasia: Did you have surgery?

Posted by delormv @delormv, Aug 29, 2022

August 2021, I was diagnosed with invasive DCIS in my left breast. I underwent a lumpectomy, chemo, and radiation. I am currently on Anastrozole. August 2022, ALH was incidentally found in my right breast after a biopsy was performed due to microcalcifications found on a mammogram. My surgical oncologist stated that ALH does not need to be surgically removed since it is not cancer. Has anyone else been diagnosed with ALH and not had it removed? Have others had theirs removed? Thank you 🙏

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rebecca55 | @rebecca55 | Dec 23, 2022

Yes, I had it removed. My surgeon wants me to see an oncologist about taking Tamoxifen. I am not doing this because my sister had terrible side effects. Scared but agreed to get breast MRI’s annually

drummergirl | @drummergirl | Dec 23, 2022

In reply to @rebecca55 "How old was your daughter?" + (show)

She is 50

rebecca55 | @rebecca55 | Dec 23, 2022

Thank you! I am 67 and had the Ahl tissue removed. Now, I have to see an oncologist for more advice. My breast surgeon thinks Tamoxifen would be suitable for me. I will not take this because my sister had terrible side effects. I don’t think I want to do anything.

rebecca55 | @rebecca55 | Dec 23, 2022

In reply to @delormv "@rebecca55 thank you so much for responding and sharing your experience. After your appointment with the..." + (show)

Yes, sure will!

Nanny23 | @nanny23 | Dec 24, 2022

Mine turned into full blown breast cancer because my doctor left it there. He said he was going to watch it monitor it. Three years later was breast cancer lobular aggressive cancer. I pound up getting a double mastectomy and implants. They found a different kind of cancer in my other breast. I got good treatment at Sloan Kettering and thank god I’m still here. That was 20 years ago. Atypical cells turn into cancer. Hope you are well and have a merry Christmas

Nanny23 | @nanny23 | Dec 24, 2022

In reply to @nanny23 "Mine turned into full blown breast cancer because my doctor left it there. He said he..." + (show)

FYI Lobular breast cancer doesn’t show in a mammogram.

toomanyquestions | @toomanyquestions | Dec 24, 2022

I had ADH in 2003. It was found due to micro calcifications. It was removed with clean margins and I was put on Tamoxifen 5 years then Raloxifene 7 years. I was wAtched high risk and 20 years later had DCIS twice. I Finally had mastectomy.
I would get another opinion regarding leaving it.