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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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kingmullen1 | @kingmullen1 | Mar 13 6:03pm
In reply to @leculdesac "Just saw this. I had a very challenging experience w/ a potential mis-dx of DCIS with..." + (show)
@leculdesac

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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Agree completely. I wrote a reply to someone, talking about how brutal and invasive I feel the excision process is for the 2nd look after a ADH biopsy diagnosis. It is a hospital based surgical procedure with a really big scar. NIH did a MIS (Minimally invasive surgery.) use trail and the outcomes were highly successful. They need to give FDA approval to make the 2nd look excision extraction less invasive.

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resort | @resort | Mar 14 8:11am

I just went through the exact same thing. Biopsy says ADH and I had mastectomy because of it. Surgical pathology report can’t find ADH at all. It’s benign. I had biopsy and surgery done at Rush Medical Center in Chicago. May I ask where your treatment is. I wonder whether we end up in the same hospital.

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delormv | @delormv | Mar 14 2:56pm
In reply to @resort "I just went through the exact same thing. Biopsy says ADH and I had mastectomy because..." + (show)
@resort

I just went through the exact same thing. Biopsy says ADH and I had mastectomy because of it. Surgical pathology report can’t find ADH at all. It’s benign. I had biopsy and surgery done at Rush Medical Center in Chicago. May I ask where your treatment is. I wonder whether we end up in the same hospital.

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@resort I believe why a biopsy gives a diagnosis of ADH is because there is actual atypia, but the pathology report from your mastectomy came back as no ADH is that the ADH was removed during the initial biopsy. I had a diagnosis of atypical lobular hyperplasia (ALH) from a biopsy, but after an MRI, no ALH was noted. I was told that it might have been removed during the biopsy. Sorry you went through all of that.

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resort | @resort | Mar 15 9:50am
In reply to @delormv "@resort I believe why a biopsy gives a diagnosis of ADH is because there is actual..." + (show)
@delormv

@resort I believe why a biopsy gives a diagnosis of ADH is because there is actual atypia, but the pathology report from your mastectomy came back as no ADH is that the ADH was removed during the initial biopsy. I had a diagnosis of atypical lobular hyperplasia (ALH) from a biopsy, but after an MRI, no ALH was noted. I was told that it might have been removed during the biopsy. Sorry you went through all of that.

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I had 5 needle sampling for biopsy. I doubt it will remove all ADH which I was told “a very large area need to be removed”. It’s either a miracle that God answered my pray to heal me before the mastectomy or it’s a medical mistake.

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