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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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@mchler73 thank you for your response....it definitely gives me more information to base a decision on. I appreciate your input. I wish you the very best!
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2 Reactions@delormv
My initial biopsy came back as ADH with a recommendation to remove it. I would think ALH would also warrant surgery.
I had my Lumpectomy 3 months later and I was diagnosed with grade 2, extensive DCIS and ALSO a very rare invasive, Metaplastic Carcinoma.
I asked my Oncologist if he thought the ADH could have progressed that soon in that 3 month timeframe and he said he believes it did.
Not sure if that helps decide anything but thought I would share my experience.
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2 Reactions@gardenfairy thank you for your response. Regarding your lumpectomies, was there ever an upgrade beyond ADH or ALH because of a definite cancer "lurking" around the atypical cells? Also, where does your oncologist work .... larger facility? It is interesting how perspectives do vary at different medical centers. I wish you the best!
So sorry to hear of this new finding. I have had 4 breast surgeries since 2006, all lumpectomies, as a result of biopsies showing atypical hyperplasias. The issue with ADH and ALH is there is a 10%-30% incidence of more advanced disease found by pathology after excision/lumpectomy. It’s the primary reason my surgeon never recommended waiting. It is so interesting how perspectives vary at medical centers around the country.
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1 ReactionThanks so much for responding. I am so happy to hear that you are reacting so well to the medication. I am post menopause as well, but the drug my doctor is going to prescribe is called Arimidex. Keeping my fingers crossed that the mri shows no developed cancer. Good luck in June!
I've been on Letrozole for 90+ days. I'm post-menopause.
I had moderate nausea (no vomiting) for about an hour after I took it for the first 3 or 4 weeks. Because of that, I started taking it right before I went to sleep, which helped me not notice the nausea. Now, I take it about an hour before bedtime; I have an alarm set so I never forget.
Other than that, smooth sailing, for which I'm incredibly grateful!
I will have my first follow-up mammograms in June. Fingers crossed (of course)!
Good luck to you! You will likely do just fine on the recommended treatment. 🙂
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1 ReactionI was just diagnosed with ALH. I see that you were to start on the aromatase inhibitor and I was wondering how that is going and which one you are taking. Assuming my MRI scheduled for this Wednesday is ok, my dr wants me to take arimidex for 5 yrs with frequent testing. I am kind of freaking out about this whole ordeal! Any info would be greatly appreciated!
That is great news!!
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1 ReactionI had an MRI on December 14, 2023 due to ALH found on biopsy and no upgrade noted. Phew! My oncologist, prior to the MRI, was not recommending surgery to remove the ALH.
Did you get a new test done on your ALH?