ALH found in biopsy, what's next?

@pipi2026, your post sounded so similar to the discussion @kmcb1117 started last year, I had to check. See here:
- Right breast biopsy confirmed ADH, ALH & LCIS what’s next? https://connect.mayoclinic.org/discussion/right-breast-biopsy-confirmed-adh-alh-lcis-whats-next/

I'm tagging @kr2025 @fronterae @kayleenchilds @leesal123 and others who have experience with atypical lobular hyperplasia (ALH) and can share their thoughts.

@pipi2026, have you made any decisions or had a chance to discuss the options with your doctor that are right for you?

I was diagnosed with ALH 2 years ago through biopsy but I went ahead and had a lumpectomy just to make sure there was no invasive cancer. There was not but they found LCIS. That was two years ago and I have been alternating mammogram and ultrasound with MRI every 6 months. I don’t know if you have dense breasts but if you do I might consider a lumpectomy or maybe very diligent screening. Because of my dense breasts they didn’t see the LCIS until the pathology from the surgery. My 10 yr risk is 39%.

Thank you for sharing, @kayleenchilds!

My breast density is Grade B and I do not have any other risk factor. What do you think of preventative medication, like baby Tam?

I am still waiting for the appointment with the surgeon which is next week. Hope to find more by then.

@pipi2026 I do not think you re overthinking at all! It’s good news that you do not have dense breasts. As far as medication goes, it was recommended that I take Anastrozole which I did but after 9 weeks I had an allergic reaction. I switched to Raloxifene which I have been tolerating very well for about 21 months. I considered baby tam which was also recommended but I am post menopausal and Raloxifene has a positive bone density component. My sister takes tamoxifen and is tolerating it very well. I have so much anxiety when the 6 months rolls around and it’s time for a test….MRI now scheduled for September. I hope you like the surgeon and get all of your questions answered. I went to 2 surgeons and decided on the woman ……so much better with a woman for me.

My high-risk breast health journey began in December 2022 when a diagnosis of atypical lobular hyperplasia (ALH) and microcalcifications led to my first excisional biopsy. From there, I started an intensive monitoring routine of alternating MRIs and mammograms every six months.
Over the next two years, the continuous surveillance led to a cycle of repeated biopsies. In July 2023, new clusters of microcalcifications required two separate biopsies in August, both showing ALH. The path forward was confusing—one radiologist recommended surgery for one site, while another suggested monitoring for the second. Between July 2024 and February 2025, I underwent three more biopsies, which revealed a combination of focal ALH, stromal fibrosis, fibrocystic changes, an anechoic cyst, and fibroadenomatoid features.
Following a short course of Tamoxifen, I made the personal decision to move forward with a prophylactic mastectomy and reconstruction in July 2025.
I’m glad I went through with it, because the pathology after surgery showed ALH in my left breast that hadn't shown up on my last mammogram or MRI.