Atypical lobular hyperplasia: Did you have surgery?

My daughter had ALH. They did a biopsy and they decided to watch it with 6 month checks. It disappeared on its own, but obviously they continue to monitor.

Yes, I am very scared and my mind is racing all over the place. But thank you so very much for the kind words and the good advice which I will do my best to adhere to! Yes, I have a wonderful family and an amazing support and my husband, so I am blessed to at least be going into something like this with supportive loved ones! You have a very merry Christmas and take care of yourself as well. Thank you!

Welcome @rebecca55, I know being diagnosed with atypical lobular hyperplasia is scary. You kinda of feel like a ticking time bomb. I know fellow members like @amolson @wendles @elsie37 @dmart37 @smaac001 @keepshining2003 @jdriver @leesal123 and @delormv have been there too.

I'm glad that you are being referred to an oncologist to discuss your options for treatment and monitoring. Be sure to share your fears and concerns about take tamoxifen. They can carefully lay out the risks and benefits of taking the medication or not for you specifically. As your mind starts to race, making notes of questions to ask can help make that worry into something constructive to help you prepare.

I hope you have family around you for the holidays and it will help to distract you while you wait for your appointment.

@rebecca55 thank you so much for responding and sharing your experience. After your appointment with the oncologist, would you mind sharing the recommendations? Thank you 🙏

I had mine removed and they are now sending me to an oncologist

I am so concerned when I was diagnosed with this. Had an excision to remove. The surgeon said I have a high risk for cancer. Wants me to see an oncologist. I am scared they are going to put me on Tomoxapan. There are so many side effects. So confused and scared

@keepshining2003, so hard to make these decisions, isn't it. I moved your question about continuing to monitor vs surgery vs tamoxifen to this existing discussion:
- Atypical lobular hyperplasia: Did you have surgery? https://connect.mayoclinic.org/discussion/atypical-lobular-hyperplasia/

I did this so you can read the previous helpful posts and connect easily with fellow members like @jdriver @delormv @leesal123, who have experience with atypical hyperplasia.

Is your leaning towards surgery or monitor and tamoxifen?

I was diagnosed with atypical ductal hyperplasia after a lumpectomy for a radial scar. The focal area of ADH was removed in that procedure. I tried anastrozole and developed heart palpitations and severe anxiety, Came off meds and went for 2nd opinion at Dartmouth. I have made lifestyle changes-plant based diet, lost 40 lbs, and exercise daily so right now I am on the 6 month monitoring and no meds. If things change we will reevaluate. I have been told, and please others with knowledge jump in here, that if ADH is found on a core biopsy then surgery is often recommended to make sure nothing else is lurking in that area. Positive thoughts your way!

I was recently diagnosed with atypical lobular hyperplasia (ALH) in my right breast. A year ago, I had Invasive DCIS in my left breast, which led to a lumpectomy, radiation, and chemo. I am currently on an aromatase inhibitor (Anastrozole) because of the cancer. As far as the ALH in my right breast, my surgical oncologist did not think surgery was required to remove the ALH since I am on Anastrozole already as well as being monitored every 6 months. Well, I wasn't comfortable with that decision because of having cancer in the left breast. I asked for a second opinion from Dana Farber Cancer Institute in Boston about what to do with ALH, and after they reviewed my scans/reports from the initial oncologist, they were in agreement that surgery was not needed since I am taking Anastrozole and that it isn't cancer. They also concurred with monitoring the breast closely. I hope this helps! Good luck with your journey and I wish you well!

I was diagnosed with this several years before I actually had a confirmed tumor. Probably would just be vigilant and continue to monitor. It may never progress to anything more. I ended up with a lumpectomy and now I am out 9 years, I was given tamoxifen also.