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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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.

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.

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.

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???

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 22, 2023

In reply to @simmecats "Hi there -- I am having a likely benign lump surgically removed in August 2023 at..." + (show)

I’ve had the surgeon, oncologist, my gyn and internist advise removal. Are they just backing eachother up???

bd2486 | @bd2486 | Jul 21, 2023

In reply to @icya2282 "Thank you, @Kanaazperiera. I'm happy to be part of this forum. I think there's a consideration..." + (show)

I have DX ADH - no detected cancer. Hard decision because it’s been recommended after a core needle biopsy followed by MRI to have the lesion removed by excisional biopsy. I’ve decided to do “watchful waiting” with mammograms, MRI and possibly preventative drugs. I’m almost 79 with underlying health issues and the low % of ADH Women advancing to cancer convinced me. Another factor is incidence of mis diagnosis or over treatment.

simmecats | @simmecats | Jul 20, 2023

Hi there -- I am having a likely benign lump surgically removed in August 2023 at recommendation of pathologist and surgeon, but I'm meeting with second-opinion breast surgeon tomorrow to see if they can dial in a diagnosis before we head to surgery. Maybe it'll head off surgery, but I'm accepting that it probably won't. I'm 52, no family history, my health is wonderfully blessedly normal. Small spot showed up on routine mammogram Nov. 2021, ultrasound/biopsy confirmed "benign epithelial lesion." 6-month follow up showed nothing, so I was returned to yearly screening, and boom, the lump grew in a year's time when I got my next mammo. First they suspected Phyllodes because in a year, it grew from millimeters in size to about the size of a peanut (2.1x2.5 cm). First biopsy pathology report indicated ADH which put me in the same exact headspace you're in and led me to this forum. But they also had to send the samples out to other pathologists because they weren't sure of actual diagnosis. Now I have the report and it says there is no atypia. "You're a mystery," the surgeon said to me, "But we would be really, REALLY surprised if this was cancer." I. Hate. Surprises. Now they're just scattering out a bunch of benign differential diagnoses including Phyllodes, PASH, fibroadenoma. I know Phyllodes can also be (or become) malignant in some cases, so for that reason alone, I want it out. Even though I'd rather not have to go through surgery, we all want to know exactly what this mass IS. Bonus will be that I don't have to biopsy this same danged spot ever again! I totally understand your frustration and confusion about what to do. Can you get a second or third opinion to help guide you?