It Takes a Team to Prevent Bilateral Lymphedema, by Sharon S. Shepard

My medical team didn’t want me to worry about lymphedema when I was diagnosed with bilateral early-stage breast cancer in 2017. My surgeon had read about a study that closely associated lymphedema with obesity, so other prevention methods seemed unnecessary if I stayed thin. A nurse told me, “Don’t worry, you’re not obese” as she blew two veins in my left arm trying to start an IV before surgery. Never mind that my lymphatic system would have to clean up the blood bruises after having nodes amputated on both sides.

I received mild admonitions to rest after surgery but wasn’t aware I needed to let my lymphatic system recover without stimulation. So, I drove myself to yoga class the next day and thought I was safe skipping exercises that used my arms. I walked my dog daily, and probably lifted too much weight. I treated my post-surgical swelling with icepacks and heat and developed surgical seromas that had to be drained under both arms. Still, my surgeon did not advise me about lymphedema prevention.

I’ve since learned that lymphedema is given little coverage in medical and nursing schools, though it affects more than 10 million Americans. Fortunately, my hospital’s physical therapy department provided a seminar on lymphedema prevention two weeks after my surgery. The physical therapist is a 10-year survivor of breast cancer, who had only one lymph node removed. Though she’s never had lymphedema, she covers her hands and arms when gardening, avoids sunburn and hot tubs, and uses a compression sleeve when flying. She takes extra care of the skin on her arm and checks it every day for cuts or insect bites that could become infected. She does not allow any injections, blood pressure checks, or blood draws in that arm, because she has seen the effects of lymphedema and doesn’t want it. She will be vigilant for the rest of her life, and she’s not obese.

The physical therapist did not have a protocol for my bilateral situation. She sighed and advised me to take turns with my arms during medical procedures – playing Russian roulette and hoping I wouldn’t develop lymphedema. Instead I made a ‘Sophie’s choice,’ instinctively sacrificing my left arm for procedures. My right arm bones were shattered in a 2008 car accident, and that arm still aches from scar tissue and metal pins in my wrist. I’m glad I protected it, because I’ve since learned that treating lymphedema in scar tissue is painful and difficult, and I’m also right-handed.

Thanks to this training, I recognized Stage One lymphedema when my left forearm swelled after a mosquito bite above the elbow. The arm developed a tingling, burning, heavy feeling that kept me awake at night. I knew lymphatic swelling would not be reduced by typical analgesics, diuretics, heat or cold – I needed the help of a lymphedema therapist.

I found Mary Hawf through my hospital – she is a massage therapist with oncology and lymphedema certification. She confirmed my lymphedema suspicions and started the manual drainage that would eventually resolve my swelling, though I had to restrict use of that arm for several weeks and wear a compression sleeve. Subsequent swelling has been reversable thus far. I am as diligent as the physical therapist with my self-care, and have gradually added additional exercise - especially rowing, swimming, Qigong, and “arm twerking” - to my previous yoga practice.

Moving the muscles and chi-energy in my arms seems to keep the lymph flowing as well. My husband and children exercise with me and give me the moral support needed to recover from cancer treatment and find my new normal. One daughter helped me shop for compression sleeves and developed a deeper understanding of the risks I face. The other re-homed her pet hedgehog, so I wouldn’t risk a quill scratch or bite. Their love and connection give me daily reasons to feel happy and take care of my health.

But I need a bilateral protocol to share with my medical providers. In every medical office, I face confrontations over lymphedema prevention, starting with blood pressure checks. (These can be done at the ankle, but few nurses have the training.) I’ve needed special permission to have injections in leg muscles and blood drawn from my feet in hospital phlebotomy labs. Each medical procedure requires fearless self-advocacy and multiple explanations of my bilateral lymphedema risk.

As more early stage bilateral BC patients are discovered through MRI and improved mammography, medical providers and patients need a clear preventative protocol for lymphedema. All need to understand the goal of not stimulating the lymphatic system, especially while it is healing from surgery. All need to recognize that removal of any lymph node creates a life-long risk of lymphedema, regardless of obesity status, and bilateral patients have double the risk and quadruple the prevention hassle. ‘Not worrying’ doesn’t help.

More steps can be taken to prevent lymphedema in these patients, and we need to start with better education. Illustrating a problem is often the first step to solving it, so I tell my story to explain, not complain. I have been lucky in many ways – to discover my cancers early, have an excellent prognosis, and have the education and resources to manage my chronic lymphedema. My doctors relied on decades of research and the experiences of millions of cancer patients to give me modern care including radiation therapy, genetic testing to show I didn’t need chemotherapy, lumpectomy instead of mastectomy, and a minimal number of lymph nodes removed.

As we look to the future of cancer treatment, I hope greater understanding of lymphedema and its prevention will result in an even better quality of life for all survivors.