Pathology reports differ: ADH on biopsy but no ADH after lumpectomy

Posted by jaffery @jaffery, Mar 5, 2023

My mamo showed micro calicifications to which I went for biopsy and then was diagnosed with atypical ductal hyperplasia and had my lumpectomy 2 weeks ago . Now my pathology report from lumpectomy says that I have no atypical ductal hyperplasia. I asked my doctor if I really had atypical ductal hyperplasia to begin with to which he said Yes and then offered me two options I can take medicine for that or 6 months screening . But I am very confused and I still don’t get it that my first report diagnosed me with atypical n when lumpectomy report came it said no atypia? Then why did my doctor give me the options for treatment if I don’t have it? And why did my biopsy report showed atypical ductal hyperplasia n the other said no atypical ductal hyperplasia? Why both reports are different from each other? Can someone please help me understand this 🙏

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I would be asking my doctor to explain this. I would want some kind of understanding before I took treatment for 6 months. Your doctor might be right on both counts but I would want to know how that happens.
You have a right to understand this before taking a drug to treat it.
Are you comfortable talking to your doctor about this?

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@auntieoakley

I would be asking my doctor to explain this. I would want some kind of understanding before I took treatment for 6 months. Your doctor might be right on both counts but I would want to know how that happens.
You have a right to understand this before taking a drug to treat it.
Are you comfortable talking to your doctor about this?

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Thank you so much for your reply 🙏 yes soon I’m gonna make an appointment with him n ask all these questions .. it’s just I am really anxious to know what it is so asked here if anyone has been in a similar situation like me and once ADH is removed , are you considered ADH free?

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I never had ADH, I had IDC but there is a whole page of folks talking about ADH.
Here is a link; https://connect.mayoclinic.org/discussion/anyone-dealing-with-atypical-ductal-hyperplasia-adh/

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Thank you so so much for your prompt response 🙏 I appreciate it a lot 😊
God bless you ❤️

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I had some ADH but it was taken out with my DCIS and IDC during surgery. ADH is not cancer. I personally have not heard of this being removed or treated with any drugs. Is this really a thing?

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My daughter has this happen I think like u did calcifications found on mammogram biopsy showed atypical ductal hyperplasia then excisional biopsy done and said "no atypia found" she is now on 20 mg tomaxifen for 5 years 8 months in ..............she is 36 they said the atypia must have been all sucked in with the first biopsy had another biopsy 6 months later showed "fibrocystic change" now she has had an MRI done and 3 lesions all abut 6 mm showed up that have to be evaluated ..................this is getting so upsetting now this constant roller coaster of all this we live in CT and are with a major teaching hospital

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@bestpommom

I had some ADH but it was taken out with my DCIS and IDC during surgery. ADH is not cancer. I personally have not heard of this being removed or treated with any drugs. Is this really a thing?

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Yes they will suggest removing ADH ,using meds, and increased monitoring. I supposedly had ADH found on excisional biopsy for a radial scar last year. They had me try an AI. I lasted 17 days and developed heart palpitations and had pretty bad withdrawal symptoms once stopping. Fast forward to this year, I had a major hospital in an adjacent state review my pathology slides. I just read their report and no mention of ADH. Waiting to meet with them at the end of the month to see what exactly is going on.

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I have been diagnosed with ADH after biopsy and my doctor recommended removal of the affected tissue (she called it a tumor) and advised they needed to make sure there wasn’t anything in the rest of the tissue or the surrounding tissue. It’s my understanding that if they found nothing then the after report should say no atypical hyperplasia.
After researching this recommendation, a very small percentage of women with this diagnosis get cancer. I have no risk factors as in family history, and this can be dealt with in preventative measures such as regular mammograms and meds to decrease estrogen production. I’m getting a second opinion, but leaning toward the preventative option. Any input appreciated.

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@bd2486

I have been diagnosed with ADH after biopsy and my doctor recommended removal of the affected tissue (she called it a tumor) and advised they needed to make sure there wasn’t anything in the rest of the tissue or the surrounding tissue. It’s my understanding that if they found nothing then the after report should say no atypical hyperplasia.
After researching this recommendation, a very small percentage of women with this diagnosis get cancer. I have no risk factors as in family history, and this can be dealt with in preventative measures such as regular mammograms and meds to decrease estrogen production. I’m getting a second opinion, but leaning toward the preventative option. Any input appreciated.

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Just saw this. I had a very challenging experience w/ a potential mis-dx of DCIS with overtreatment consequences. I won't go into details here, but I highly recommend you check out David Page (if he's not retired yet) from Vanderbilt, who's an expert on something called "florid hyperplasia" and how it's distinct from ADH and DCIS. Of course, these concepts and tx recommendations change by the decade, if not sooner--but trust me. Radiologist from the TOP institutions in the US can disagree about how to "read" DCIS biopsy results--and they can disagree on ADH. AI-enabled radiology is changing this.

ADH at least at present is seen as a risk factor for future invasive or inflammatory breast cancer and so watchful waiting is important. Whether you're willing to go through the challenges of radiation and/or hormonal therapy--well, that's beyond my commentary.

The breast cancer treatment "system" can IMO tend to distort patients' and families decision-making--once dx, you've got this entire culture of dx, typologies, support groups, surgical and pharmaceutical regimens, all in an environment of intensified fear w/ relative and absolute risk. Barring inflammatory breast cancer or highly symptomatic BC w/ mets, I've found it's important to get mentally far away from the system for a little bit--just a week?--and focus on nature, life, love, the minutaie and big goals--to assess whether the treatment plans of the "system" are what one really wants.

I don't think the people working w/in this are ill-intended, but many organizational and industry forces kind of come together to put patients at risk of over-treatment. When it comes to lower risk conditions like ADH, DCIS, BRCA-positive status, etc., it's all the more important that we step back and breathe space around the situation to ensure we're making decisions that are best for our quality of life. God bless.

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I had ADH diagnosed after a needle biopsy. I had the lumpectomy or partial mastectomy. It was a no brainer for me. I wanted it out and to be sure there wasn’t cancer. They found nothing further which was fabulous. I am still considered high risk and will be checked every 6 months. Good luck!

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