Anyone dealing with Atypical Ductal Hyperplasia (ADH)?

Posted by EJ @elsajohnson, Aug 7, 2018

I am sorry if this is not the right forum. I know ADH is not cancer and this is a breast cancer forum, but I can't find another forum that may be more relevant.

I am wondering if there is anyone who is dealing with ADH or has been diagnosed with ADH that can share their experience. I was diagnosed a month ago. While I am relieved that I don't have cancer, I am confused with the radiology report that shows BI-RAD6 - surgical removal is recommended. I have seen a breast oncology surgeon and I don't think she took me seriously because I don't have cancer. It almost feels like I wasted her time seeing her because I don't have cancer. If ADH is no big deal, why BI-RAD 6 (which i understand is for biopsy proven malignancy). I also read up about ADH online and understand that with ADH, my risk for breast cancer is 4x. Should I not worry about it and just do annual check? Should i see another breast surgeon? Should I see an oncologist? Do I need genetic testing to better understand my risk? I feel like an impostor for even posting this on a breast cancer forum but I am genuinely confused and concerned. Any help will be greatly appreciated.

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simmecats | @simmecats | Jul 22, 2023

In reply to @bd2486 "I’ve had the surgeon, oncologist, my gyn and internist advise removal. Are they just backing eachother..." + (show)

Caveat: I'm not a health professional, but my guess is they are truly giving you the recommendation they think is correct for the type of lesion you have, based on their own experience and study. But, you are right to weigh their recommendations against your own experience, age, quality of life, and your own particular health situation. I know this is such a difficult thing to do in practice when you hear so many voices coming at you.

bd2486 | @bd2486 | Jul 25, 2023

ADH diagnosis - no cancer. I’m electing no drugs, just monitoring. Almost 79 - already have some of those side effects, don’t need more
Input???

annie291 | @annie291 | Jul 26, 2023

In reply to @doyoga "Hey there. Yes. I’m scheduled for bilateral mastectomy in 2 weeks. I had a cluster of..." + (show)

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.

maureenmckean | @maureenmckean | Jul 26, 2023

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.

debbie2721 | @debbie2721 | Jul 27, 2023

In reply to @maureenmckean "I’m 53 now but was diagnosed with ADH in September at 52. Biopsy followed by lumpectomy...." + (show)

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

susanpcw | @susanpcw | Aug 7, 2023

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?

fronterae | @fronterae | Sep 20, 2023

In reply to @susanpcw "Hello there. I am very happy to have found this forum. I am 49 years old..." + (show)

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.

mynushooz1 | @mynushooz1 | Sep 21, 2023

In reply to @fronterae "Hi! I’m 51 now, but a year ago I was diagnosed with ALH. My doctor did..." + (show)

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..

dinora08 | @dinora08 | Sep 21, 2023

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

mchler73 | @mchler73 | Sep 21, 2023

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!