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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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Ok thats good. Mine was SO palpable! Like a little hard marble! But who knows what else is lurking⊠😩
@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!
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!
Maybe because mine was so deep. Hope you are ok now.
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.
Hi. Mine was large in case lobular breast cancer and it wasnât visible on a mammogram. Maybe a sonogram would have showed it. It wasnât visible deep in my right breast.
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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. đ 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!
It actually does... it CAN evade detection, it's sneaky and can move in fine lines... but I had a 1.4 cm lesion and it lit up like a Christmas tree!
I am trying to get views from others about ALH~ diagnosed through biopsy and MRI. I have been offered a surgical biopsy or just a 5 year treatment of Arimidex with 6 mos follow up. I have no history and am post menopausal. My surgeon said the drug would lower my risk of it progressing to cancer by 75%. Anyone else trying to decide?
Hi! I was diagnosed with ADH December 2023. So similar to your lobular, but mine is in the ducts. It was biopsied in two different parts, same breast. When I actually had the lumpectomy, the final biopsy report showed a small amount of dcis with clear margins. So I did not need any additional surgery. Just started radiation last week. They even sent my pathology report out for a second opinion to confirm Dcis. So just be careful with anything atypical. Imo, itâs really tricky. Even my breast surgeon said at my consultation that she didnât think my Atypia would be found as anything more. Low and behold it was! I am pretty young though , so for me I was definitely wanting the lumpectomy for sure. Not sure of your age. You can leave it alone , but if you had other cancers , I would not trust anything more in my breast and want it out and a path report. But thatâs me. I also on the other hand did extremely well with surgery. You canât even tell I had anything done. Itâs your body , your choice. Just be sure you will not regret leaving it alone.
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