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Atypical lobular hyperplasia: Did you have surgery?
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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Hi. Mine was large in case lobular breast cancer and it wasn’t visible on a mammogram. Maybe a sonogram would have showed it. It wasn’t visible deep in my right breast.
It's definitely sneaky. I'm lucky mine somehow did "group together" in the lobe I guess, despite being negative for e-cadherin (sp?) and with a propensity for growing in single file. Terrifying really. Just saying mine did light up in mammogram and really lit up in the MRI contrast so they CAN be seen that way, but not always.
Maybe because mine was so deep. Hope you are ok now.
Yeah I was so lucky that mine was at the surface basically, very easy to feel! I hope you are well too! I am about to start rads soon. Beat wishes!
@jennifer72 My RO told me that the purpose of the radiation is to kill any stray cells. Lobular is usually not palpable. I never felt mine. The first report called it "tubulo-lobular." But from the look of some sample slides online, the lobular cells always line up. The Dr who read the mammogram saw an "architectural distortion." Thank goodness!
Ok thats good. Mine was SO palpable! Like a little hard marble! But who knows what else is lurking… 😩
I was just diagnosed for the second time (different breast) post Core Biopsy with ALH.
First time I had the ALH removed the tissue to make sure it was not upgraded.
I am not sure if I want to have surgery again on the other breast. Has anyone not had the ALH removed?
I had the same thing happen with a lumpectomy I had last week removing a TNBC tumor. They got all the cancer and I achieved PCR but there was a margin with ALH. I feel that is a sign more cancer is forming. I'm scheduled for radiation as well. Will this wipe out the ALH?
I just found out I had Atypical Lobular Hyperplasia in my right breast. After 3 mammo, a biopsy that took 24 samples and yesterday a MRI just yesterday. Next week I need with the surgeon to see what we going to-do I guess. I personally want it removed. They say its not cancer but still it has to go. I wanted to ask you why did you get radiation if you didn't have cancer or you did. Is that a precaution to do that. TY
I had a lumpectomy with the ALH removed and now I am on low dose Tamoxifen . I had IVDCarcinoma in the other breast in 2003 so I think the advice to take an AI or Tamoxifen was a good move for me.
Good luck!
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