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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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Glad I found this forum! I just had a lumpectomy for a confirmed ILC tumour, 1.4 cm, grade 2. In the extra margins they took, they found ALH. I should be so happy... it seems my ILC was quite "contained" still as all my margins were negative for cancer, and my nodes were negative as well! But this is such a scary piece of info. I feel like there are baby cancer cells waiting to turn evil still left in there. 🙁 Meeting doctor on Tuesday and scheduled for radiation and AI's or Tamoxifen... but will the radiation kill the ALH? Anyone else had this experience? Thank you!
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.
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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… 😩