What You Need to Know About Lymphedema: Causes & Myths

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By, Stephanie Graff, MD
Director, Breast Program at Sarah Cannon Cancer Institute at HCA Midwest Health

Stephanie Graff, MD Director of the Breast Program at Sarah Cannon Cancer Institute at HCA Midwest Health
Stephanie Graff, MD Director of the Breast Program at Sarah Cannon Cancer Institute at HCA Midwest Health

Biopsy. Surgery. Chemotherapy. Radiation. Second opinions. Clinical trials. Pills. Insurance. MRI. Cancer. Cancer. Cancer. These are the words swirling around a person’s mind when they are diagnosed with breast cancer. As a breast medical oncologist, these words frame most questions I get during those initial weeks after diagnosis. A surprising few ask me about another word: Lymphedema.

Lymphedema, in the case of breast cancer, is an accumulation of fluid in the arm, breast, or chest wall as a result of a disruption in the natural drainage of lymph. Lymph is the natural colorless fluid that bathes tissues. While it is a natural fluid, its accumulation is not and can be problematic. While this is most common in people undergoing an axillary lymph node dissection (removal of many lymph nodes), there are countless proven risk factors. There are also endless myths about the causes of lymphedema. Separating fact from fiction can be daunting.

At the American Society of Breast Surgery annual meeting, lymphedema is always a hot topic. Recently presented data suggested risk factors include type of surgery, patient body mass index (BMI), axillary radiation, and type of chemotherapy received. They reported no statistically increased risk of lymphedema with routine variables like blood draws, exercise/strength training, blood pressure measurements, injections, trauma or air travel.

(Let me re-word that for emphasis.) After a diagnosis of breast cancer, obesity increases your risk of not only lymphedema, but also cancer recurrence. Healthcare providers often caution patients away from strength training and exercise based on a misconception that they cause lymphedema. They may also discourage lab draws, injections, and blood pressure measurements that are a routine part of the care.  It is worth noting that exercise is one of the best proven strategies to manage the joint pain that accompanies treatment with aromatase inhibitors. Breast cancer patients with severe joint pain are the patients most likely to discontinue this life-saving therapy.

Gina, a breast cancer survivor, says that as a nurse, she was quite aware of the risk of lymphedema. She thought she was doing everything right to minimize her risk of lymphedema while maximally treating her cancer. And for three years after diagnosis, she had no lymphedema. Then she woke one Saturday morning with a swollen hand.

“I instantly knew, and couldn’t stop wondering ‘What did I do wrong? Why me? Why now?’ I worried, and still worry sometimes, about exercise. Will downward dog make my lymphedema worse? What about weight lifting? What about salt in my diet? Do I need to give up chips and salsa? I also worry about the cost of the lymphedema compression sleeves!”

So what does cause lymphedema?

  • Axillary surgery. The risk has a direct relationship to number of nodes removed. So having 1-3 sentinel nodes sampled is much lower risk than having 25 lymph nodes removed during an axillary lymph node dissection. Know what surgery you have planned and why. After surgery know how many nodes were removed in total.
  • Axillary radiation. Discuss with your radiation oncologist the total dose going to your axilla and how it might impact your risk of developing lymphedema.
  • Women with higher body mass index have an increased risk of lymphedema. Talk with your physician-led team about options for weight loss.
  • Type of chemotherapy. Early data shows that the risk of lymphedema is highest in women receiving chemotherapy regimens that include a taxane, like paclitaxel (Taxol ®) or docetaxol (Taxotere ®).

What does not cause lymphedema?

  • A gradual increase in your physical exercise program, including strength training and stretching exercises can improve lymphedema. It is important to build gradually, but nothing is truly off limits. Research has shown that maintaining an exercise program is important to long term reduction of risk. Active muscle tissue helps move lymph fluid.
  • Routine medical care. Vaccines, blood pressure measurements, venipuncture (lab draw), and peripheral IVs do not cause a statistical increase in the risk of lymphedema.
  • There is no evidence that air travel in itself increases the risk of lymphedema. Prolonged travel may increase the risk of blood clots, which do increase the risk of lymphedema. Ask your treatment team about your risk of blood clotting.

It is important to me as a physician not to discount patient experience. Some patients have had a routine procedure complicated by an unusual side effect and, as a result, have developed lymphedema. For example, an IV gets infected causing cellulitis (infection of the soft tissues) or the IV leads to a blood clot (deep venous thrombosis or DVT). Both infections and blood clots have a relationship with lymphedema. I want patients to be empowered with the proven facts and be comfortable challenging the myths. I want patients to know enough about lymphedema to ask thoughtful questions about their risk. In my one-on-one patient discussions I often say, “Listen, you have the other arm. Use it first. But if something happens and they have to use the at-risk arm or the affected arm, watch it carefully. Tell me if it is changing. The best treatment of lymphedema is early treatment.” If you happen to be a patient that had bilateral breast cancer or bilateral breast surgery, talk to your health care team about your best options.  I am lucky to practice with certified lymphedema therapists who routinely see my patients for education and early treatment. Ask your care team to connect you with a certified therapist.

Lymphedema can be life-altering. Robin, a patient living with lymphedema, works as a dental hygienist. She states “I can’t wear a lymphedema garment when I work. I worry about over working my hand.” Things she enjoys like gardening are forever limited by the diagnosis of lymphedema. Robin notes that her lymphedema is the result of her lymph node dissection, radiation and chemotherapy. But after reflecting on life with lymphedema, she concludes ‘But I am here and I am healthy.’”

I hope to see less lymphedema. Better identification of risk factors, improved patient and provider awareness, and early detection and treatment should lead to a smaller impact from this critical side effect of treatment. As we continue to learn more, be sure to ask your care team about pre-operative assessments & education, early detection and screening for lymphedema, and certified therapists in your area.

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