Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

I was diagnosed April 1925 with ADH due to microcalcifications being found on my mammo. This was my regular mammo, but I noticed a small depression in my breast curvature and flagged it so that whoever read my imagery, took a second look. AI (!) took a second look and actually isolated the five microcalcifications, I had a previous lumpectomy in the region (fibro adenoma), family members with BC, and due to fibrous breast tissue the radiologist recommended mag seed placement, and lumpectomy. At lumpectomy the path report was ADH plus lobular carcinoma in situ (LCIS). Despite the name, LCIS is also a pre-cancer - but this one generally increases the risk of BC in both breasts! LCIS can develop into invasive lobular carcinoma and it's a sneaky cancer as it doesn't make a ball- the cells are linear... and very slender so it is difficult to diagnose through imagery; it's too small/skinney. Following that diagnosis I had genetic counseling and they found two variance of unknown significance (VUS). I do not have BRACA mutations but one of the variances is tied to BRCA and is known to cause ovarian cancer - they need more data in order to understand if it predisposes for BC. They do not use VUS for making clinical decisions - but having ADH and LCIS, plus my personal and family history, elevated my lifetime risk to 38- and the lifetime risk or increases as we age. I am 64. After receiving the diagnosis of ADH and LCIS I asked for a prophylactic double mastectomy. I did not want to have any more surgeries or have a diagnostic every six months to monitor my breast - nor did I really want to take hormones or drugs to prevent breast cancer from developing. In the US if you have a lifetime risk or of 20 or more, you can have a mastectomy as treatment. The primary objecive with both ADH and LCIS is risk reduction - and a mastectomy is the most absolute form of risk reduction; so for me, a prophylactic double mastectomy seemed the practical choice. Other women opt for biannual monitoring and and/or drug treatments. It's a personal choice, I chose to remain flat - no implants. One of my goals was no further surgeries and since implants eventually fail, requiring additional surgery, I was lucky to happen upon a website called "not putting on a shirt" where I learned a lot about alternative flat closure - a form of simple mastectomy that ensures the closure is aesthetically pleasing. I also explored other forms of plastic surgery that create breast mounds so that I could remain confident I was making a well informed choice. There are a lot of surgical options- or non-surgical treatment plans if you choose to keep your breasts. The good news is the path report on both breasts were clear; no additional lesions, etc. so I did not require any additional (chemo or radiation) treatment. Having a pre-cancer is no joke - it may or may not advance to invasive (true cancer) and the best thing you can do is educate yourself, have a genetic profile run to help assess lifetime risk - and then explore all options. My diagnosis of ADH allowed me to nip BC problems in the bud and lead a life with little worry about future development of BC or surgeries - or recurrence. FYI You still have to check your chest wall as if you have breasts for recurrence even if you have a mastectomy! My lifetime risk score is now 1%. I don't mean to scare you that you might have something more than ADH; I am not sure how typical it is for a second form of pre-cancer, or a cancer, to be found when having a lumpectomy for ADH. I want you to know my story so you know possible outcomes - while some readers might think that was a horrible outcome, to me it was not; I caught a problem early and I'm almost assured of a long and healthy life. Good luck with your journey!

@hamilton1945
Hi! I had a biopsy in December last year and ALH (atypical lobular hyperplasia) was found. I had a lumpectomy in January this year and the mass removed didn’t show any signs of cancer and more surprisingly any ALH. I am scheduled for a mammogram and an ultrasound in November and MRI after that. The surgery wasn’t bad. I am a lung cancer survivor and I am not under any therapy. I never had doubts about having a lumpectomy after the biopsy showed ALH. My surgeon described the surgery step by step and we talked about the possible outcomes of course. However, nothing is sure until the results of biopsy of the mass removed. Please let us know about your next appointment. You are going to be ok!

Thank you so much! I am so glad that your procedure was successful! Waiting for the pathology will be so hard! I will keep you posted. Thanks again!!

@hamilton1945
HRT did not cause your condition. Let go of your guilt.

Thank you!! ❤️