Atypical lobular hyperplasia: Did you have surgery?

Oops sorry, I meant to reply to @delormv

I would definitely get a 2nd opinion!
My initial biopsy said I had ADH (I think ALH is similar) and I had surgery to remove it and that biopsy came back as extensive, level 2 DCIS but they ALSO found an extremely rare Invasive Metaplastic Carcinoma.
If I would have just gone with the first biopsy results and did not do surgery, in the long run, the outcome would have been much worse.
Hopefully that is not the case with yours, but much better to be safe than sorry.

Nanny my name is Leslee and I just had a breast medical reduction and my pathology report came back with ALH in my right breast. The doctor has referred me to the oncologist at the mayo clinic in Arizona in December to take an MRI to do further tests. What is your thoughts and I have a 27% chance of getting breast cancer in the future.

Rebeca my name is leslee anne. I just had a breast reduction and durning surgery they found ALH with a 27% change of cancer. I have read some of your post and I am going to the oncologist at Mayo in AZ in December for an MRI. Very concerned and trying to get more answers .

I didn’t have ALH. I had ADH. I Think they are similar but not sure. I had surgery to remove the microcalcifications ADH area. I think they also want to make sure the pathology report confirms no cancer. The biopsy might miss the cancer. I had a great pathology report with no further ADH seen. But I had one small spot.

Thinking of you and yes certainly a second opinion is warranted! I go to Dana Farber in Boston and I know they like Mayo have a team that covers second opinions. Based on others here your ALH is a certain subset and needs a team that is well versed in that subset. Please keep us posted...xo

I was diagnosed with ALH and microcalcifications in December 2022 and had excisional biopsy on December 30th. They are monitoring me with MRI and mammogram every 6 months. In my last mammogram July 2023 they found more clusters of microcalcifications. I had one biopsy August 1 and another one August 16, same breast different locations. Both have ALH and microcalcifications, one radiologist suggested surgical consultation for the first biopsy and other radiologist suggested monitoring for the second biopsy. My surgeon suggested for the first one just monitoring and waiting for his response for the second one. I know it’s not cancer but a high risk patient. Do I need to get a second opinion?

@spinnerbait thank you for your response and I’m so sorry to hear about your experience. It sounds like a frustrating and unnecessary surgery that lead to an unwanted result. I appreciate your perspective. Hugs and prayers for you, too!

First I want to wish you luck in your journey! March 2022 I was told had Alh from a core biopsy. I was told it had to be removed though was only .5cm. I asked for a MRI first to double check what was there. I was told it wasn’t needed. The dr that did the core biopsy put in marker. They put in a guide wire for the lumpectomy. The dr that put in the guide
wire went from the top of my chest to the lower end of my breast then directed the wire to make a circle within a circle to hit the small mass. They also could not find the marker. The surgeon took out 27 grams of my breast. That is equal to holding 27 Pennie’s in your hand or 5.5 cm by 3 cm by 3.5 cm. Plus because the
Y could not find the marker they took out 3 more specimens the smallest being 3 x 3 x 3. I was a 34B. I now have a 34 mini breast on my left size. Guess what they found!!! Nothing!!!!! I would not have any surgery again without an MRI. I’m now wondering if the pathologist was incorrect on what she reported. All they found was some radio scar. I was told by a plastic surgeon I would need several operations to make me whole again. All this for a pea size spot. Medicare will only cover 1 surgery. 70 percent of women with Alh will never get cancer. I wish I had read more before they rushed me into surgery. Alh means you have a chance of getting cancer maybe. Hugs and prayers for you!

My biopsy revealed ALH after having micro calcifications on a mammogram. I opted for the lumpectomy. Pathology revealed LCIS. While this is still not cancer it helps me better understand my risk. Initially I was on Tamoxifen but was switched to Letrozole after a total hysterectomy and salpinge-oophorectomy.