Living with lymphedema

By: Mitria Di Giacomo

President www.NexusPlexusNY | Cancer Survivor
AiRS Advisory Board Member

Up until three years ago, I’d never considered that I would wake up with lymphedema. I wasn’t exactly clueless about the condition, but you deal with so much going through breast cancer treatment that the last thing you’re thinking about is a situation that could appear years, sometimes decades, after surgery from breast cancer. I have secondary lymphedema as a result of breast cancer surgery. I was diagnosed in 2007, went through breast surgery and treatment in 2008, and until 2013, I had escaped getting lymphedema. My breast surgeon, Dr. Deborah Axelrod, removed 28 lymph nodes for testing. She told me that cancer had stopped at the sentinel node – it’s the job of the sentinel node to act as a gatekeeper and block other cancer cells from spreading. I’m lucky it did its job.

When I realized that my arm felt heavy and looked slightly larger, I went to see Dr. Axelrod, who referred me to NYU Langone’s Rusk Rehabilitation to see a specially trained therapist twice a week over a period of three months to measure my arm and help filter the lymph fluid. When breast surgery comprises the lymphatic system, the lymph fluid can build up, and tissues can swell. The treatment at Rusk Rehabilitation is considered one of the best-in-class – I had Complete Decongestive Therapy (CDT), an intensive program that included bandaging, compression garments, manual lymphatic drainage, arm exercises and self-care. It’s cumbersome, complicated and one of the most efficient treatments for getting it under control. The first time I wrapped my arm; it took over an hour to get it right. There are layers and layers of bandages that need to be placed and positioned in different directions to get the fluid to move. In May of 2013, a month after I started treatment, I was invited to attend an International Gold Conference in Vicenza, Italy. I committed to wrapping my arm each and every night to get it back to normal. It was challenging to come back after a long day of meetings and spend 30-40 minutes wrapping my arm. I began to understand that to avoid flare-ups it’s important to manage it on a daily basis.

Once I got my arm back to normal, I continued for over a year with the treatment protocol. Then I began to loosen my standards by intermittently wrapping, or not doing it at all for weeks on end, and then feeling the tightness and seeing the swelling return. I will be starting intensive treatment again next month.

Here are five ways you can control a flare-up:

  • Wear a compression sleeve if you’re flying because cabin pressure can trigger another episode.
  • Use sunscreen and cover your arm in the sun.
  • Don’t get your cuticles cut to prevent infection.
  • Wear a compression sleeve at the gym or when lifting heavy objects.
  • Elevate your arm above your heart when laying down.