LE: Cancer's "Dirty Little Secret"

A couple of years ago, Binney and I were interviewed for a Washington Post article, thanks to another woman who posts on the boards, and Binney declared LE "Cancer's dirty secret" and we got into a big battle with the NLN as Nicole Stout wrote a letter to the editor that LE is painless and we forced them to retract that erroneous statement.

So, I'm reading about the new NIH grant to study LE, and I read that the Washington Post calls it "cancer's dirty little secret" and I know that it was Binney!

http://www.atlantamagazine.com/health/2013/09/23/georgia-tech-gets-2-million-to-study-lymphedema

Health & Wellness > Georgia Tech gets $2 million to study lymphedema
Georgia Tech gets $2 million to study lymphedema
Condition is rarely discussed and often misdiagnosed
Posted on 9/23/2013 7:47:00 AM by Mary Jo DiLonardo
 
Winship Cancer Institute/Emory

The Washington Post called it breast cancer's "dirty little secret." Lymphedema is a painful and chronic swelling of the lymphatic system that often affects women after breast cancer surgery or radiation, and sometimes men after prostate cancer surgery. The condition is infrequently discussed by doctors and often misdiagnosed. The National Institutes of Health just awarded Georgia Tech a $2 million research grant to study lymphedema. We talked to J. Brandon Dixon, assistant professor of mechanical engineering and biomedical engineering, who is spearheading the research.

What is lymphedema?
Throughout the day, your blood is delivering nutrients and oxygen to your body. A lot of the fluid that is dropped off is not taken back up into your veins. The lymphatics return fluid back into your blood, pumping it back into your circulation. When that pumping system doesn’t work, you get a buildup of fluid. Usually it's in an arm or a leg. You get severe swelling and over time, that can cause that arm or leg to grow. You also get a buildup of fat. People with severe lymphedema can't even walk. A leg, for example, can grow to several hundred pounds. In the U.S., the most common population that suffers from lymphedema is breast cancer survivors. Up to 40 percent can develop the disease.

Is there a treatment?
Treatments are essentially compression garments. You wear a compression sleeve or bandage. I'm simplifying it, but you basically bind it up so the limb can't grow if you wrap it tight enough. You wear them 24 hours a day. You take them off to take a bath, but that's it. They also prescribe manual lymphatic drainage which is a particular massage technique.

Is there a cure?
Once you have it, you have it. If you catch it early enough, you can prevent it from getting really severe—maybe so you don’t have to wear the garment 24 hours a day, maybe just when you're sleeping. This patient population feels they're rather large neglected. The message they receive is often, "I cured you of cancer; this is not a big deal." However, many people feel this is worse than the cancer itself. There's a lot of pain. They're severely disfigured. They can't even go out.
There's not a lot we can do for these patients. It's not like they're being ignored and not being given treatment. There just isn't a good treatment.

Why were you intrigued by lymphedema?
I got involved as a PhD student at Texas A&M. I was a biomedical engineer in optics and imaging. There was an imaging problem that this lymphatic physiologist was working on. I had never even heard of it. There were just a lot of interesting opportunities and challenges to approach as an engineer. I did a post-doc in Switzerland at a lymphatic biology lab. That's when I made a decision that I was going to build my research career on this.

You received a $2 million research grant to study the disease as an engineer. How does engineering come into play?
That essentially is the field of biomedical engineering. For us, it seemed like a natural fit. The lymphatic system is a series of pumps that constantly modulate their function based on the demands put on them. You have all these complicated vessels that work together. To us as engineers, that's an engineered system that's going to have optimal ways to perform. I think it lends itself well to try to provide insight to test it.

What do you hope to find? A treatment? A cure?
Both. The immediate goal is we want to figure out what biological response is responsible for this downward spiral of lymphatic dysfunction. Some 30 to 40 percent of women get lymphedema after breast cancer but 60 to 70 percent don’t. If we can't identify why, we can identify that at-risk group and we can help early on. Is it a particular diet or particular exposure? Then we can identify therapies to correct that problem. The long-term goal is diagnosis and therapy. Can we detect it before it occurs and in the end, we'd like to be able to provide better treatment options for these patients apart from keep it wrapped up in a sleeve for the rest of their lives.
- See more at: http://www.atlantamagazine.com/health/2013/09/23/georgia-tech-gets-2-million-to-study-lymphedema#sthash.yvCrxleF.dpuf

Here's the Washington Post article that quotes Binney:

http://www.washingtonpost.com/wp-dyn/content/article/2010/11/08/AR2010110803739.html

Just so she gets credit for coining the phrase....