Personal Stories of Lymphedema--Binney

Gosh, I hate lymphedema! It's ugly. I remember the first time I saw a woman with her arm wrapped in layered bandages. It was in the waiting room at my oncologist's office. I thought, "Thank God that's never going to happen to me!" She was overweight, and I was not. Somebody had told me you had to be overweight to get lymphedema. And besides that, I'd only had one node removed. One node was nothing. Not to worry. That's what my doctor said. So, I felt really awful for her, but I wasn't worried.

Now, of course, I have lymphedema too. Both arms (one side was strictly prophylactic), my entire chest, my right side and back. I've had it since 2004, about six months after my prophylactic mastectomy. Most of the time I think I've adjusted to it, but here I am still writing about it, so maybe it's fairer to say I've "owned" it, but the adjustment is still a work in progress.

I was surprised to learn that my doctors didn't know much about this medical condition. And I was surprised to discover how many breast cancer veterans are dealing with it. Most of all, I was amazed – and I still am – that a problem this serious, with this many people struggling with it, could be so completely ignored and unknown.

And breast-cancer related lymphedema is only the tip of this sorry iceberg. A majority of men who undergo prostate surgery will develop leg lymphedema, as will a hefty proportion of women with gynecologic cancers and patients with melanoma. Lymphedema can occur following accidents as well, or with other surgeries not even related to cancer. All of those are called Secondary Lymphedema, because they're a side effect of something else entirely.

But there's also Primary Lymphedema, a condition that develops at any age as a result of an in-born deficiency in the lymphatic system. Babies can be born with lymphedema, or young teens can suddenly find themselves sporting a deformed leg or foot. It's a battle for us breast cancer veterans to get diagnosis and treatment for our lymphedema, but the Primary lymphers often face decades of doctor-hopping before they even hear the word "lymphedema" spoken.

Taken as a whole, the lymphedema community is huge and varied – and silent. Those of us with lymphedema have a tendency to retreat with our misshapen limbs into isolation and wounded silence.

That was the biggest surprise of all to me: all us noisy, self-advocating, awareness-mongering breast cancer "survivors" stunned into shocked and shamed silence by this diagnosis. To me, that's compelling. I want us to find our voice – one very loud, united voice – and begin to clamor for pre-surgical and on-going lymphedema assessment and education, prompt diagnosis, and referral to fully-trained and adequately-supervised therapists, all of it supported by clear and complete medical coverage and the research needed to find a cure.

I hope this web site will be one more way to give us all the confidence to STEP UP to this challenge and SPEAK OUT for every person with lymphedema.