Atypical lobular hyperplasia: Did you have surgery?

Yes, they removed all the ALH. Now I will continue with alternative screenings MRI and mammograms every 6 months. And my appointment with the oncologist is March 1st.

Thank you. I appreciate your response and I hope your scans will always be clear of cancer. 🙏

None

@keepshining2003
I was diagnosed with atypical ductal hyperplasia which I think is similar. I had an excisional biopsy/ lumpectomy. I would have been prescribed tamoxifen but I have the factor five Leiden gene and the oncologist was worried about blood clots. I am taking Anastrozole and I don't seem to have any side effects after 4 months. I take it before I go to bed.
I was told tgey would like to keep me on it 5 yrs. I will also have mammograms every 6 months on that breast. Wishing you have a good outcome.

@rebecca55 If you don’t mind, would you please share any updates from your MRI in April? I go back and forth on my decision whether to have the ALH removed. Thank you.

I don’t go for my MRI until April of this year, 2023

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.

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!

@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!

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?