Just when you think it’s safe to go back in the water …

I’ve crossed a bunch of first anniversaries over the past six weeks. Getting my diagnosis, MRIs, surgery. A year ago I was just past my surgery and doing very well. I started physio treatments the day after surgery to recover as best I could and – critical to me – ward off lymphedema. I was very concerned that my sentinel node biopsy could cause lymphedema, so worked proactively to do everything within my power to give my traumatized lymph system the best chance possible to recover and function well.

Until April (10 months and counting after surgery), it seemed to have worked. I had no sign of puffy limbs or dysfunctional joints. Then I noticed that my left breast was slightly puffy – my bra left a dent in my skin that lasted for up to three hours after I took it off at the end of the day. At first I wasn’t fussed – I figured it was a bit of a bonus that now my left breast was again the same size as my right! 🙂 My left hand was getting slightly puffy around my thumb – very slight, but it felt like the ‘cording’ tightness I’d experienced during my surgical recovery when the three lymph nodes were removed. The breast dent went away over night and the thumb was normal by morning, the pattern repeating daily.

I mentioned it to my medical oncologist at our check-in meeting in April, and she said to keep an eye on it. Over the next month it didn’t improve, so she took another look. The preliminary diagnosis – radiation-induced chest wall lymphedema. Just when I thought I’d passed all the hurdles, I find one of my worst fears coming true. (Most lymphedema develops in the arm after breast cancer. But, just like my cancer was not common, my chest wall lymphedema is not common.)

I was hopeful that since there were no signs of lymphedema after surgery or during radiation, that was a good sign. Plus, I’d been proactive with physio, diet and exercise to minimize my risk as much as possible. Prevent, prevent, prevent!

They warn you that lymphedema can develop years after treatment ends. And here’s the kicker – there’s very little you can do about it if you get it. Lymphatic massage, compression garments, lymph drainage assistance machines for extreme cases . Really? That’s it?

As more and more cancer patients survive because of early detection and improved treatment options, the challenges of the things they will face post-treatment – like lymphedema – need more research. Our healthcare systems are not currently equipped to robustly support post-treatment patients. And, insufficient research is available on things like lymphedema treatment – or better yet, avoidance – options to help patients make informed decisions about options that are best for them.

With more people living longer after cancer, it’s my belief that our demands from the healthcare system are like chronic disease management patients. We’re not the same as we were before cancer, but we don’t have cancer any more and need proactive programs designed to manage and prevent disease and promote good health. In many ways, it’s a “good” problem to have. After all, it’s only recently that cancer patients lived long enough to have long-term needs after surgery and adjuvant treatment. We’ve come a long way thanks to phenomenal researchers and world-class oncologists at the BC Cancer Agency and elsewhere.

I’m optimistic that my pro-active approach of lymphatic massage therapy, acupuncture (yes, it seems it can help) and strategic application of Kineso tape will spark those lymph systems into their old selves. I’m going to give my struggling, hard working little lymph nodes all the help I can to nudge them back into full working order.

Fingers crossed.

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