Atypical lobular hyperplasia: Did you have surgery?

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. 🙂

Thanks 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!

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.

@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!

@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.

@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!

I had atypical ductal hyperplasia and LCIS in 2003. Found by calcifications. I had lumpectomy and went on Tamoxifen followed by Raloxifene. In 2022, they found 2 areas of DCIS same breast. Found on Screening MRI(which I had every year.) not visible on mammogram. I had double mastectomy due to my 30% risk of recurrence. Even tough I am Gene negative .

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, it’s really tricky. Even my breast surgeon said at my consultation that she didn’t 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 that’s me. I also on the other hand did extremely well with surgery. You can’t even tell I had anything done. It’s your body , your choice. Just be sure you will not regret leaving it alone.

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?