what is a clean margin?

I thought I would post my experience with margins in case it helps someone else in their care decisions.

I was diagnosed in Dec 09 at age 41 with IDC (1 cm) in my left breast. The first surgeon I went to recommended lumpectomy and radiation with possible chemo depending on Oncotype score. Seemed logical from everything I read. So we went forward with this. After the surgery pathology came back. Stage 1, Grade 3, 1.3 cm and clean margins. Sounds good, however I decided to get a second opinion at the large cancer center nearby. As part of their review, they reviewed the pathology slides and when I went in I was surprised to hear that the second surgeon did not think the margins were clear because cancer cells were right up to the edge of the specimen. Frankly, that didn't sound clear to me either, so the research began. Many many pages of information later we found that every surgeon has a different definition of what a clean margin is! My first surgeon was positive that all the cancer was removed. However, being the conservative person that I am, I decided to go with the second surgeon's advice of either re-excision or mastectomy. I opted for re-excision, still hoping to preserve the breast. Lo and behold, there was more IDC and also extensive DCIS. At the follow up appointment, the surgeon said he still didn't think that the margins were clear though. He recommended either another re-excision or mastectomy.

I had chemo scheduled to start 3 weeks later and decided to go ahead with the chemo and do the surgery afterwards. At some point during the whole chemo treatment, my husband looked at me as we debated the re-excision/mastectomy/do nothing decision and said "why are we messing around with this - we don't want to do this again in 3 years" and we decided mastectomy with reconstruction. It's a tough decision to make when there may not be any cancer left at all, but I'm a believer in making a decision based on the information that you have at the time and not second guessing later.

So, chemo came and went. We met with a plastic surgeon and decided on a traditional TRAM surgery because it had the best chance of success with little tissue death. My mastectomy was scheduled for July 1 with immediate reconstruction. I'm happy to say that it went well and I'm home and writing this. My belly is tight, but the drains are all out and I'm recovering. The abdominal tightening is kind of painful, so I am stretching it a little more every day. I understand that over time it will all stretch and feel better. Anyway, about the margins - the pathology came back and there was more IDC and more DCIS scattered throughout the breast tissue.

I've decided to send the path reports to my first surgeon. Not to blame, but to let him know that even though he was sure he'd gotten everything, he hadn't. If it helps him make a different decision with someone else, then there's something gained from all this.

What I learned is that there's no set rule as to what a clear margin is and it helps to ask your surgeon what that term means to them. Also, don't be afraid of getting a second opinion.

Hugs to all -

Stephanie