livingcured

I'm sure you've all been on the edge of your seats, waiting for Part II of 'Why Cancer Sucks' as if the natural readership for this blog doesn't have a woefully complete understanding of cancer's suckiness. In contrast to the more publicized sucky aspects of cancer, this series will highlight the less well known downsides to the disease and its treatment.

A few posts ago I mentioned the lymphedema that I've developed. For those who desire a fuller explanation and who are wondering what it looks like, this bulletin from the NCI may help. At its worst, my right arm looks like the post-treatment arm. I've thankfully never swelled as much as the photo on the left. For me, the most interesting thing I learned from this article is that over 30% of patients under the age of 45 develop lymphedema. That's news to me. My surgeon told me I wouldn't develop lymphedema because I'm thin.

When I was first diagnosed with cancer I longed for my former, cancer-free world-- a world that I no longer remember. In a strange parallel, when the lymphedema developed I found myself wistful for the time when I ONLY had cancer worries, and not lymphedema too. Gradually, instead of thinking lymphedema=cancer, I've come to view it more clearly as a side-effect of life-saving treatment instead of a menacing, malignant shadow on my livingcured life.

I have focused my frustration on the fact that lymphedema is misunderstood and understudied. The treatment for it is antiquated and for me, has required a lot of time in hot, uncomfortable compression wraps. However, in a rare glimmer of hope, in late 2006 the FDA approved a promising new treatment for lymphedema. The surprising downside is that I can't find anyone in NYC that is using it.

At this point, I don't know what is worse, the fact that I have lymphedema or that I can't get a hold of something that could possibily help me. The institutions that I rely on for cancer care aren't using it, despite the FDA approval and a very compelling study of the treatment published in the journal Cancer.

Remember: "'It's no longer sufficient to say, 'Well, you survived.'"

Here's more info on the condition for those who are curious.