pure DCIS but "focally positive deep margin"?

Tracyanne,

With pure DCIS, whether you have a lumpectomy or mastectomy, chemo would never be necessary since it is a systemic treatment (i.e. it goes through your whole body) and DCIS is confined to the breast.  But radiation is a different story.  Although it's often said around here that you can avoid radiation by having a mastectomy, sometimes that's just not true.  After a mastectomy for DCIS, usually if margins are 1mm or greater (or certainly if they are 2mm or greater), radiation won't be recommended.  But for margins that are less than 1mm, I have seen a number of women get radiation.  This seems to be supported by a study released last year, which showed a higher than expected recurrence rate in cases where the margins after a mastectomy for DCIS were less than 2mm: 

http://www.ncbi.nlm.nih.gov/pubmed/18954711?dopt=AbstractPlus

In my case, I had a 1mm anterior margin, near the incision on my skin.  My surgeon and oncologist did not recommend radiation however when I had my reconstruction done, I asked my plastic surgeon to remove an extra area of the skin on both sides of the incision. 

Edited to Add:  The Van Nuys Prognostic Index is used to determine whether a lumpectomy alone, a lumpectomy + radiation, or a mastectomy is the best choice for DCIS patients.  To my understanding, it does not address the question of when radiation may be required after a mastectomy.

Hey Tracyanne,

I just joined this site this pm after I went for my mastectomy f/u and was told since I have 6 margins less than .1 cm that I need further surgery to take tissue from my chest wall to make sure the DCIS hasn't spread. The doctor I saw today is filling in for my regular surgeon who's out until 9/7. My regular surgeon told me over the phone 2 days after my surgery (8/25) that I would need no further treatment since my DCIS was not invasive and my sentinal lymph node was negative. I am freaking out and very confused! I have a call into to the surgeon I saw today for clarification but she probably won't call back till Friday. My next surgery is scheduled for 9/9. I don't know what to think at this point. I thought it was all over except for reconstruction. My pathology report states "size of invasive component cannot be determined" due to the number of less than .1 cm margins. Has anyone else had to have more surgery following a mastectomy with DCIS? Thanks!

Hi Ladies,

Unfortunately, those of us who have had mastectomies for DCIS with positive margins are a very small group and doctors often disagree about various treatment options. I know how difficult it is be faced with this situation as I'm in a similar decision-making process following surgery on June 25. My procedure was a nipple-sparing double mastectomy with immediate DIEP/SIEP reconstruction. The post-surgical pathology report indicated "DCIS is present on the inked anterior margin of the lower inner quadrant."

My surgeons explained that if my cancer had been ER+, Tamoxifen (or similar drug) would have been their top recommendation. But given my ER- status, this would not reduce my risk of recurrence. Instead, I could consider a surgical excision of the skin in the area of the positive margin during stage 2 of my reconstruction or treatment with radiation.

A Radiation Oncologist with whom I consulted strongly advised me to have the radiation as she thinks it would reduce the risk of a recurrence by one half. However, another Radiation Oncologist who recently reviewed my case in consultation with an Oncologist and Breast Surgeon at a major research facility stated that radiation would not be her first choice and stated that she would not know how to dose me properly because the breast tissue had been removed.

This panel, after consulting with one another, advised "a more aggressive and radical approach...a generous ellipse of skin being resected around the nipple areolar area to include the skin of the lower inner quadrant where the margin is known to be positive," explaining that the entire flap might need to be sacrificed if the location where the margin is presumed to be positive risks the blood supply to the rest of the implant. In this case, reconstruction with a different technique could be performed.

Their report continues, "This is a very unusual situation to deal with....We are aware of the significant departure from the conservative measures already recommended...and we're careful to point out that the likelihood of her developing a skin recurrence may be very low, but if she were to develop it, the biologic significance of it could be very serious. It comes down to a question of cutting one's losses for a situation that is not likely to develop."

I'm still consulting with my team of doctors who lean toward a more conservative approach at this time. Part of me wants to seek additional opinions from other institutions while another part of me is hesitant because I realize none of this will be clear cut. As my breast surgeon has told me, doctors sometimes DON'T KNOW the answer and what I must do is make the RIGHT decision for ME.

I wish you peace in your own process, hoping you'll be able to gather the information you need, then draw your own conclusions and trust yourself to know what's best for you. Please share your journey as it unfolds. Though I'm sorry you're going through this, I hope it helps to know you're not alone and others truly understand the confusion and difficulty involved in the choices we must make.

Take care!