Angelina Jolie's Innovative Approach to SNB

I'm schedule for a prophylactic bilateral mastectomy for BRCA2 at MGH in May. My surgeon wants to do a SNB as a precaution. Should I run for the hills? Reading these post I'm getting more anxious by the moment.

tangerine, I had SNB with my prophy bmx. The BS felt that there was something inconclusive in my imaging results, and she recommended that I redo a lot of imaging. Or, she offered, she could do SNB on that side as a precaution. I asked about LE risk with SNB and she said it was nearly nonexistent, and so I agreed, rather than imagine getting caught up with insurance about an imaging re-do because one breast center--where I opted to have bmx/diep--disagreed with radiologists at the breast center where I started the whole process. And now...I have LE on that side. Fortunately it is a very mild case. It's annoying, achy, gives me a funny burning feeling often, but only rarely do I have visible swelling. I wear a night garment every single night, and that seems to help me limit daytime compression to times of high activity, flying, etc. Lots of women here have stubborn, difficult cases, and my issues are minor in comparison.

I now know that studies suggesting 'nearly nonexistent' LE risk after SNB are not necessarily valid studies. The definition of SNB can mean more than just one node that you think of when you hear the term--in my case, I lost 5 nodes--so sometimes the procedure doesn't turn out to be as limited in scope as is suggested ahead of time, Also, most studies of LE risk tend to have design flaws that make them challenging to compare results and build a long-term profile of risk factors. I don't think my BS purposely cherry picked her risk stats, but had I understood at the time that LE risk after SNB was not as trivial as she portrayed, I would have at least gone through the hoops of seeing if insurance would cover the imaging do-overs.

What you're wondering about is not at all simple to answer, because LE after SNB really is less likely than after ALND, for most people. The studies do seem to offer consensus on that point. The real wild card that no one seems to have figured out is how to know if a person is predisposed to LE. One researcher said it like this: Some of us are born with super-highway lymphatic pathways; others get country lanes. A few nodes removed create a pothole for the first group, but the country-lane folks get something more like a mudslide that closes the road, causing flooding when it rains.

You can take some precautions that studies suggest might reduce LE risk after surgery (the darn studies again!). These include taking care not to raise your arms above shoulder height for several weeks after surgery, even if it means delaying PT for range of motion issues that can occur after MX. Also, get baseline arm measures before surgery, so you'll have a good shot at the earliest LE diagnosis, when a few studies (just a few, again!) suggest there's some chance or reversal. I think MGH has a standard policy to get baseline measures, no?

I have a document that summarizes some strategies for doing what's possible to limit LE risk with surgery, and if you PM me we can exchange email address and I'll be happy to send it to you (or to anyone else reading this, for that matter). The information is drawn from the studies, some of which are inconclusive and contradictory. But generally the strategies can do no harm, so they're worth doing even if the evidence for some of them is limited.

In the end, I think it boils down to which uncertainty worries you the most--LE risk, or the 'what's lurking' question that the SNB attempts to answer.

Best wishes in your decision-making!

Carol