Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

That’s terrible and you should tell the nurse how much harder it was to hear you have cancer after that.

I was also diagnosed with atypical ductal hyperplasia. I just remember the nurse telling me the good news is you don't have cancer. She should not have said that. It gave me a false optimism. After biopsy they said I had DCIS. I just went for my 3rd lumpectomy because I did not get clear margins on the first two. I will get the path report Oct 5. for this last one. I just wish they had not said I did not have cancer when it ended up being cancer.

I found a large lump in my breast this past May.
The initial needle core biopsy can back as ADH.
My surgeon removed the mass and the whole thing was then biopsied.
It ended up coming back as extensive, grade 2 DCIS.
The biopsy also showed that I have a very rare invasive Metaplastic Carcinoma.
Since my first biopsy showed ADH, but it ended up being something much more serious, I would definitely find another oncologist/surgeon for a 2nd opinion!
It is my understanding that it is typical to remove all of the ADH and biopsy the whole thing.
If you are not comfortable with the response you received from the doctor, trust your gut!
Through this whole process, I have learned that you need to advocate for yourself and getting a second opinion is worth it!

I have the same thing the doctor did the surgical remove. However he did not recommend medicine or check up every 6 months. That has me confused because for what I have read they do both

I’m living with the same diagnosis. Had surgery in February. I also was on Tamoxifen for four months. I had to go off also because of the very severe side effects . My mom and sister had this diagnosis . I have anxiety about what’s next . Five biopsies and surgery . I’m 68..

Hi! I’m 51 now, but a year ago I was diagnosed with ALH. My doctor did an excisional biopsy. He sent me to an oncologist and she suggested tamoxifen ( but I’m not using it because all the side effects that it can cause). I’m in a close monitoring with mri and mammograms every 6 months. I had DNA testing and was negative. But my sister had DCIS at the age of 36. In June 2023 I had my mri and in July 2023 my mammogram which again came back with 3-4 clusters of microcalcifications. I did one biopsy in August 1st and after that one I did another in August 16 in other area. Both came back with ALH. I just received a call from the breast surgeon’s office that I’ll be close monitoring and that he’s not recommending surgery this time. So I need to wait until my next mammogram in December. This situation make me anxious and nervous.
My insurance provided me with an expert opinion, I’m waiting from them to collect all my medical records in order to receive the the expert opinion/second opinion. Once I receive that opinion I’ll decide if I’m staying with the my breast surgeon or find a new one.

Hello there. I am very happy to have found this forum. I am 49 years old and just had a breast biopsy last month. I received the results from my breast specialist and she informed me that I have ALH (Atypical Lobular Hyperplesia). I asked if she would remove the small mass but she said that it is no longer “standard of care” to remove it. I found this very odd. She told me that I will have testing every 6 months to monitor the situation and that I should see a Medical Oncologist. The oncologist will discuss medications that can reduce the risk of breast cancer. In addition, I will be having genetic counseling this week. Has anyone else gone through this? And can anyone tell me if their breast specialist told them that removing the mass (ALH) is no longer standard of care?

I wonder the same thing. I had small calcifications that were caught early and I was prescribed anastrozole.

I’m 53 now but was diagnosed with ADH in September at 52. Biopsy followed by lumpectomy. Nothing further was found. I’m not taking any drugs but they will do the mri/mammogram alternating ever 6 months. Interesting how some take medication. Maybe it’s because they only found a small amount of ADH so that’s why I don’t need meds.

After biopsy and lumpectomy I have the same diagnosis ( ADH, ALH) plus LCIS. My surgeon says I have over 50% risk for cancer. MRIs/Mammograms alternating every 6 months for the rest of my life. I am considering a preventive bi lateral mastectomy. How are you doing after having yours? I am also athletic and worry I'll be limited long term after surgery.