ADH found in margin of re-excision lumpectomy

MimiATL

Hi all,

I am 56 and began this journey in late August when calcifications were found on a routine mammogram. I then had more mammograms, an ultrasound and then a stereotactic biopsy on 9/16 which led to a diagnosis of ADH and ALH. I then had an excisional biopsy on 10/23 after which I was upgraded to DCIS. Two of the margins were not clear so on 11/7 I had a re-excision lumpectomy. BS called tonight with results from lumpectomy - no DCIS in margins but one margin with ADH. BS was very happy with this report and felt that this might mean that I could get by with no rads, and only tamoxifen.

At first I was thrilled with the report, but then on further research tonight found that margins with ADH are not considered clean and next steps are not clear cut. Some recommend more surgery, others rads.

Does anyone have any experience with ADH at the margin? I will see oncologist next but anxious to hear insights from this group.

Also, any thoughts on re-excision? I'm much sorer than I was after excisional biopsy. Also have not slept well for weeks (hence why I'm up at 1am writing in this forum). Just wondering if this too shall pass. I've been holding up well (continuing to work and telling only a very few people at work what's going on) but suddenly feeling overwhelmed.

Mimi

ballet12

My understanding is that they do not go for clean margins with a finding of ADH. I also had ADH on the stereotactic biopsy. The excisional biopsy showed significant amounts of DCIS, with no clear margins. They didn't even indicate any adjacent benign high risk conditions in the pathology. One can assume that they were there, since the DCIS was next to the ADH. Like you, I had a re-excision with one margin not clean, but that margin had DCIS, so I had the third surgery. None of the pathology reports mentioned anything about any ADH, etc., not because they weren't there, but because they weren't concerned about high risk benign conditions. I had ADH/ALH also several years earlier, found by excisional biopsy, and they did not seek clean margins. If you read Susan Love's website as well as other sources, they indicate that you don't need clean margins with ADH alone. I don't know why your surgeon thinks you may not need radiation. The purpose of the radiation is to get rid of any stray DCIS cells still present in the breast ducts. Radiation does not, apparently, affect atypical cells. Did you end up with wide, clear margins with regard to the DCIS? This is important, whether or not you do rads, although if you had a large amount of DCIS, it seems like rads may be in order, especially if it is intermediate or high grade.

BLinthedesert

Hi Mimi, I had ADH and other benign stuff on my margins, and no re-exicision was recommended. The recommendation for radiation should be made in conjunction with a consult with a radiation oncologist, and hormonal therapy with a consult with an oncologist. Don't fret, all your team members should be able to clearly lay out your options and risks so you can make the best decision for you. If the don't, then find a new team.

Good luck.

SJW1

Dear Mimi,

When I had my lumpectomy for DCIS in 2007, they said I didn't get clean margins, that I still had DCIS in 4 of 6 margins. I consulted with Dr. Michael Lagios, a world renowned DCIS expert and pathologist with a consulting service that anyone can use. He disagreed with my local pathologists and said what they were seeing in the margins was ADH not DCIS, therefore no more surgery was needed.

He also used the Van Nuys Prognostic Index to calculate my risk of recurrence without RADs as only 4 percent. Therefore I elected to omit radiation as the benefits did not outweigh the risks for me. Since Dr. Lagios also says tamoxifen only reduces recurrence risk by about 2 percent for DCIS, I also decided to omit tamoxifen.

It gave me great peace of mind to have someone who has written many of the DCIS textbooks and has studied the disease for the past 30 or 40 years to tell me a lumpectomy was all I needed.

If you would like more info re Dr. Lagios or want to read more of my story please check out these two websites:

http://dciswithoutrads.com/

http://dcisredefined.org/choices/rads/

Please also feel free to PM me if you have questions.

Wishing you health and peace of mind,

Sandie

NoTime4This

My re-excision was in a surgical center next to the hospital with less potent anesthesia, so for me that made it easier overall. They didn't even give me additional pain meds, but I had leftovers from prior surgeries. The surgical bra helped a lot. To be fair, the lumpectomy was the thing that was bothering me the most, so my mind was mostly on my arm.

MimiATL

Thank you Sandie,

I elected no more surgery and docs concurred that no rafiation required. Hooray! Started tamoxifen Sunday, December 1.

I look forward to both learning more about Dr Lagios and reading your story.

Many thanks for this information and continued good health.

Mimi