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Tuesday, May 17, 2016

Clearing up some confusion

We met with the surgeon today - partly as a followup to last week's surgery, but also as an opportunity to get some clarity on what the tumor board said, and why what I was hearing from the nurse navigator seemed so different.

Everything is healing up much better than last time - hooray! Plus she had taken just a little bit of skin around the incision both for better healing and to have pathology done on it - and there was no trace of cancer - not that we were expecting any but it's good to check. She said it's ok to resume normal activities, and I should be able to start radiation in another 3 weeks.

We now feel like we understand much more what the tumor board was saying. For one thing, they had no conversation about the dratted spots, because they couldn't see them on the most recent MRI. We'll call that good news :-)

What Dr. D told us was that there are a couple of governing bodies in the area of breast cancer treatment which look at thousands of cases to come up with recommendations and "standards of care." Post surgery, you always want to hear that there were clear margins - that they got all of the tumor and just a little more besides. Over the years, the standard of what a margin is has changed. It used to be 5mm, then 2mm, then 1mm. Now it is "no ink." The tumor and surrounding tissue is rolled in a special ink so that the outer edges can be seen under a microscope. If the tumor doesn't touch the ink, you're "clear." The margin for the tumor was 2mm; the margin for the DCIS was .5mm (DCIS is not cancer but sometimes is pre-cancer. It was around the tumor and that's why she took out more than we might have originally thought - she knew it was "not quite right.")

So the debate was essentially between the docs who said, "Yep, that's right." and the ones saying, "I'd be happier with a bigger margin." Given that it was obvious she was going to have to go in and clean out the hematoma anyway, there were a lot of people saying, "Since you're going in anyway, take out more in the tumor area as a diagnostic procedure." But others were saying, "The reason we do radiation after lumpectomies is to deal with what we can't see. We're not seeing anything on the images, so the radiation will handle it just fine."

Part of my confusion and fear was that when Dr. D last told me about the tumor board findings, it was all new and surprising info. So when I called the nurse navigator to get some clarification, she was reporting to me the fact that a lot of docs were supporting the "since you're going in anyway" scenario.  But Dr. D was reading those docs as saying, "Well, we don't know for sure, but new and bigger margins are a way we could be sure." They weren't saying it as a "have to."

So I'm breathing easier. I'll meet with my oncologist on Thursday as (hopefully!) an extra confirmation that I can continue on with the plan we'd developed for radiation along with other tests and meds. I won't be able to post on the blog right after that because I'll be heading to Wild Canyon Games for the weekend, so I won't have time or, more crucially, internet access!

I know this is long already but I just have to add this in. A few years back, I had two friends going through kidney surgeries. The first one had been given an adorable "plush" kidney - a little pillow shaped like a kidney, so I got one for my second friend, Rick. When he heard of my diagnosis, guess what he ordered for me?
He actually ordered it months ago from an Etsy site, and the apologetic letter that came with it was hysterical. She said she was sorry for the delay in about as many ways as it's possible to apologize. So our new catch phrase in that group is, "I'm so sorry. I can't apologize enough for how sorry I am..."

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