Atypical lobular hyperplasia: Did you have surgery?

Even though a cancer diagnosis and a pre-cancer diagnosis are not the same, I believe the same feelings are triggered when given either diagnosis. Fear, denial, waiting for more info, what do I do next, how bad is it...the list goes on and on... No one is ready to hear it! It sounds as though you are not being heard when you bring up your diagnosis to others. It's hard for others to understand what a non-cancerous diagnosis like ALH or stage 0 cancer really means since it's "not cancer".... and a "what are you worried about" type response and attitude (believe me I know because I have received the same reactions) , but hearing the diagnosis is still devastating and we just want to be heard or share our feelings/stories. Good luck with your appointment regarding your reconstruction options and hopefully you'll get some good options! 🙂

hi @wendles. I was diagnosed with ALH last year, after I had a lumpectomy. originally my lump was biopsied and thought to be a phyllodes tumor but after lumpectomy, it was found to be a fibroadenoma. the ALH just happened to be in the border of tissue that they removed with the lump. I was offered tamoxifen but, and I kind of feel selfish about this, I was 37 at the time and didn't like the idea of going through menopause that early. So I asked about mastectomy, specifically a prophylactic mastectomy with reconstruction if possible. the oncologist and general surgeon told me that it was an option. 6 months after my lumpectomy I had a bilateral prophylactic mastectomy with reconstruction. I will be post op 1 year in November 2022.

I was not offered radiation therapy for the ALH. Not sure if that is something that is normally offered.

I am also new here and was just looking to view other experiences. I'm a mom of 3 and a family medicine doctor.

I hope you have healed welI and are happy with your reconstruction. that is a lot for you with little ones running around.. I had a lumpectomy that they found the ALH. I had considered another (I had one at 29 thirty years ago) mastectomy but was talked out of it by my husband because of heart issues I am going through too and worry about how much it would take out of me. It took three months to get cardiology approval for the lumpectomy. The dr gave me option for mastectomy but wasn't pushing it since I was stage 0. My radiologist I saw Monday said the radiation will kill any ALH so that was good news. My first treatment is 18th.

hope you have healed welI, that is a lot for you with little ones running around.. I had a lumpectomy that they found the ALH. I had considered another (I had one at 29 thirty years ago) mastectomy but was talked out of it by my husband because of heart issues I am going through too and worry about how much it would take out of me. It took three months to get cardiology approval for the lumpectomy. The dr gave me option but wasn't pushing it. My radiologist I saw Monday said the radiation will kill any ALH so that was good news. My first treatment is 18th.

I have LCIS as well as another neoplasm
I believe there is a need for much more research and better treatments
Watchful waiting seems best
along with MRI mam and clinical exam for me
I had surgical biopsy but thats all

Estrogen to me is important
I went off the Tamoxifen and as studies show topicsl estrogen doesn't hurt went on that
Best wishes

Hello, I am 44 years old just found out I have atypical hyperplasia. How many of you on here had the surgery to remove it? How many just kept doing the mammogram every 6 months and taking tamoxifen? Did tamoxifen did you bad or any side effects. Any comments on this would be so helpful. Thank you.

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.

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 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!