DCIS High Grade Comedonecrosis DMX with positive margins

I have DCIS High Grade Comedonecrosis in the right breast. I just had a Double Masectomy. We just got the pathology back which stated I had one positive margin and one .3 mm margin. It seems like the doctors aren't too concerned because it is just DCIS. But my fear is that it is high grade and often can turn into IDC. Does anyone have a similar case? The doctors are discussing radiation and additional surgery. I just want the cancer gone. It is so frustrating to get a double masectomy, not nipple sparing and still have cancer.

Kroge6, I'm so sorry that you have gotten this news of affected margins. I also had a BMX at age 37 with saline implant reconstruction (high grade, comedo necrosis, ER+/PR-). It was only about 1.5 cm but deep. I had some issues with my biopsy and my surgeon found some DCIS cells along the biopsy tract and did not get clean margins there at first. He knew this during surgery, so he took more tissue and skin and did get clean margins. The biopsy scar was not taken though.

It is now 8 years later and I have had a recurrence (thankfully DCIS again and not IDC). I found my lump while it was still about 1cm (since it was now so close to the skin), so again I have caught it pretty early. Looking back, I wish I had known to ask more about the margins. Also, they did not take my biopsy scar. I wish they would have. My recurrence is right under my biopsy scar.

Now, I have had a lumpectomy (after a mastectomy - yes, it is a thing), then a re-excision because my margins were not clear (4 focal points). I am now scheduled to have radiation and tamoxifen. The after care was a tough decision for me too. I wanted to still have a recurrence rate of 2% (because I already had the darn BMX's), but doctors think that now that I AM the 2% and now with close margins and multiple focal points that my risk is higher. So surgery alone is probably not a wise decision for me anymore.

BTW, I was tested and do not have BRCA, but my mom did have BC at 49. No other relatives with BC though.

All I can say is that DCIS is tricky. It spreads out and even a cell left behind can grow. You have been strong to make the choices you have made so far. Ask lots of questions and make the right decisions now for your long term health. Also, if you feel you need it, get 2nd opinions. Before I go forward with my treatment, I am getting an e-consult from Mayo. My RO here is setting it up for me. They are going to review all of my pathology and reports.

Best wishes.

I am 35 and just had a unilateral mastectomy for DCIS (>5cm, grade 3, comedo type, 0/4 nodes, Er+/Pr+) My pathology report came back that the upper and chest-wall margins were less than 1 mm. The margins weren't actually positive, and the surgeon said that as long as they were technically negative it didn't matter, but I am somewhat concerned about chances of recurrence. The surgeon did recommend tamoxifen since mine was strongly er+.

Kroge6 have you decided to do radiation?

Kechla, I am so sorry to hear about your recurrence.

this seems to be the type of situation for which a second opinion is in order - should you have a re-excision to obtain clear margins - if you do, is radiation still necessary. I am so sorry that you find yourself in this situation.

Kechla, Can you share more information about the "e-consult" from Mayo that you referenced?  I would be completely interested in doing a second opinion in this manner!  I think the more information I review, the more confused I get!  Thank you so much!