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Topic: Anyone have a BMX for DCIS & then told residual ADH was found?

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Oct 17, 2020 11:32PM

LovesLiterature wrote:

Ive been meaning to post this question for a while but wasn't sure which topic to post under. Technically, I'm calling on all bilateral mastectomy ladies to chime in if you were given the all clear after your BMX, but were told that they found ADH in your residual pathology.
Let me back up. In 2016, they discovered atypical ductal hyperplasia with microcalcifications, in my right breast; they did a biopsy and the diagnosis was upgraded to DCIS. In November 2016 I had a bilateral mastectomy. No hormones. After I came out of the surgery the pathology report came back as no more DCIS. However, ADH was found in the residual breast tissue in both breasts. After the whirlwind of expanders and then reconstruction in 2017, it never dawned on me to ask about margins for ADH. All of the research I have done on this topic, comes back as pretty vague—sort of a "non-issue"... it turns out they do not do a whole lot of research or case studies on women who have ADH in their residual pathology post bilateral mastectomy. Though I did find some things on lumpectomies... but close to nothing on BMX. And now with COVID-19, I cannot even get in to see my surgeon (I have a dent in my left breast that I've been worried about—along with a few {maybe} scar tissue bumps in both breasts). I wish I knew what the statistics were for ADH found after BMX surgery. Just worried if there is still residual ADH hanging out in the little bit of breast tissue I have left.

If you have any insight, I'd really appreciate it.

Reconstruction/May 2017. Bilateral Mastectomy 0/3 nodes: Nov. 2016. Additional ADH found after mastectomy. DX: DCIS Right, 1cm, Stage 0, Grade 1, ER+/PR+ HER- Original Dx: ADH July 2016. Excision Biopsy: September 16, 2016
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Oct 18, 2020 12:37AM Beesie wrote:

Since DCIS is often found mixed together with ADH, I would expect that many DCIS patients have ADH in their MX pathology.

My pathology report read like a pathology textbook, there was so much stuff in there. A microinvasion of IDC, lots of grade 3 DCIS with comedonecrosis in two different areas, bit of grade 2 DCIS in one area, ADH, sclerosing adenosis, etc. etc.... it's been years so I don't remember the whole list but there were quite a few more. I had one close margin (1mm at the skin) with the DCIS. No reference was made as to whether ADH or anything else was close to or at the margins; normally only IDC and DCIS are mentioned, since conditions like ADH do not need to be surgically removed. When ADH is removed, the reason is only to ensure that nothing more serious is lurking.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Oct 18, 2020 12:50AM LovesLiterature wrote:

Bessie, thank you for your quick reply. It’s sounds like you had a lot more going on in post-pathology than I did. At least your onc gave you information on your margins. I guess my concern is that they don’t bother with measuring ADH margins. But given the close connectivity to DCIS, (that ADH sometimes develops into DCIS), why wouldn’t they? I guess I should just bite the bullet and address these questions to my doc. I just dread making the call: “Hey, can you look at my lumpy bumps and my dent... oh, and can you tell me why ADH was in my Post-mastectomy boobs but no one was concerned?... and take the time to tell me all of this during an unprecedented pandemic!” Ha!

Reconstruction/May 2017. Bilateral Mastectomy 0/3 nodes: Nov. 2016. Additional ADH found after mastectomy. DX: DCIS Right, 1cm, Stage 0, Grade 1, ER+/PR+ HER- Original Dx: ADH July 2016. Excision Biopsy: September 16, 2016
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Oct 18, 2020 09:17AM LivinLife wrote:

I too had this - more similar to what Beesie described. The path report was so vague though that the MO was unable to tell me if it was within the 5 cm DCIS area noted on MRI or throughout my whole breast. The DCIS measurement went down from nearly 5 cm the MRI noted to 1.2 cm post surgery (1.5 cm additional had been removed on biopsy in addition to even the 5 cm). The remaining area of the 5 cm, if not the whole breast, was a mix of just craziness with all that was present upon final surgery pathology. they told me I definitely made the right decision for type of surgery. I also had no choice because I could not have radiation....They said lumpectomy without radiation with the original diagnosis would not be appropriate for someone my age (58). I decided before then on BMX so no worries....

Dx 7/2020, DCIS, Left, 1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Oct 18, 2020 04:37PM Beesie wrote:

Since ADH is common, and since it's not checked for in surgical margins, I suspect it's not all that unusual for some ADH to remain in surgical margins. A lot of pathology reports read like LivinLife's and mine, with lots of 'incidental' findings of fibrocystic and high risk conditions. Any of those conditions could be in the margins - pathologists only look for and report on DCIS and IDC.

For those who have an excisional biopsy for ADH, margins usually don't come into play unless either DCIS or IDC is found. So although some ADH may remain in the breast (and often does), a re-excision isn't usually recommended and rads is never recommended. Those diagnosed with ADH may choose to take endocrine therapy, but it's considered optional - some take it, some don't.

After a MX with clear margins, whether the diagnosis is DCIS or invasive cancer, the risk of a localized recurrence is 1%-2%. The risk of a new primary, in the small amount of breast tissue that remains, is also about 1%-2%. For those who have pure DCIS and clear margins, these risk levels are not considered high enough to warrant either rads or endocrine therapy. So if ADH is in the margins, how much would that increase the risk and would it warrant a change in treatment?

Well, if rads isn't recommended even for those who have an excisional biopsy for ADH and who may have ADH in their remaining breast tissue, it wouldn't seem to make sense to recommend rads after a MX, even if a small amount of ADH remains. (I seem to recall reading that rads isn't particularly effective on ADH, but I'm not sure about that - maybe someone else reading this will know.)

What about endocrine therapy? It can reduce the risk of breast cancer developing from ADH by 50%. But if endocrine therapy isn't definitively recommended for those who have ADH and have two breasts with all their breast tissue, is it warranted when the patient has only a small amount of breast tissue left? Even if the risk of recurrence is doubled to 2%-4% because of the presence of ADH, a 50% risk reduction is at most 2%. Endocrine therapy presents, in the best case (healthy patient with no other health conditions) approx. a 1% risk of serious side effects and a 50%-60% (or maybe much higher than that) risk of quality-of-life effects.

And that may be the answer as to why our doctors don't consider whether we have ADH in the surgical margins. Because the additional risk isn't high enough to warrant a change in the treatment plan and the inclusion of any additional treatment.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke

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