Lymphedema refers to the swelling of one or both arms or legs caused by damage to lymph nodes from cancer treatment (such as radiation, surgery, chemotherapy, or hormone therapy), which can cause decreased lymphatic fluid transport, leading to immediate and late side effects associated with lymphedema. In patients with breast cancer, lymphedema most often occurs in the arm on the side of the affected breast, but it can also affect the chest, neck, hand, back, or the underarm.
Lymphedema changes life forever. Too many women say their experience with lymphedema is worse than their experience with breast cancer itself.1 Andrea Brennan, OTR/L, CLT-LANA, CSCI, WCC, a certified lymphedema therapist, witnesses this daily in her practice.
“My clients arrive already feeling marginalized by their healthcare providers, who lack knowledge about long-term lymphedema management, and who consistently minimize the impacts,” Dr. Brennan says.
The literature women receive about lymphedema often says that coping with lymphedema is a linear process: something women need to do to move beyond cancer and adjust to their new lives. Physicians often blame their patients’ side effects related to lymphedema on a lack of adherence to self-care recommendations.
But the real-life experience of survivors is far different. The physical pain and swelling from lymphedema is not something you cope with one time and you’re done. On any given day, a woman can be coping with her lymphedema in the morning, but by the afternoon, something happens and she is justifiably angry and frustrated again.
Dr. Brennan points out that women with lymphedema confront ongoing losses every day. They constantly experience issues of poor body image and a loss of confidence in their body’s ability to function normally. Women with lymphedema have anxieties about their sexual attractiveness, and they resent constant stares and the barrage of questions from strangers. Lymphedema related to breast cancer may negatively affect function in the arms and hands.
People are often dismissive about these concerns, telling women that they are lucky to have survived cancer, and it is time to get over their anger about lymphedema. But living with lymphedema is living with a chronic disability and permanent uncertainty, never knowing how bad it will be from day to day, knowing that there is no cure, only management.
Discussing Lymphedema Provides Relief
“My clients arrive frustrated with feelings of resentment and distress. Although they perform the self-care regimen recommended by their healthcare professional, they still remain emotionally tormented,” Dr. Brennan says.
That is why she encourages new patients to discuss their experiences in dealing with the physical, emotional, and psychological distress of lymphedema.
“Often, no one has ever asked them [the patients] the questions I ask,” says Dr. Brennan. “For the first time, they believe I accept their internal experience with their lymphedema problems as valid and understandable. Talking to me authenticates their experience.”
Women get different advice from their physicians, their nurses, and their therapists, according to Dr. Brennan. “There is no consensus in the medical community about how to diagnose lymphedema, how to stage it, and how to treat it,” she says. Women are told they must spend hours wrapping their arms, using compression machines, and getting a massage. Treatment is expensive and time-consuming.
“Copays are high, supplies are not covered by insurance, and women feel they have already lost too much time at work, or enjoying family and friends. But they try to do all this anyway, and too often, they don’t see improvement in the areas of their lives that matter most. It’s easy to understand why women give up on what they’ve been told to do,” says Dr. Brennan.
Dr. Brennan’s experience with lymphedema shows it is always changing, and unfolding in different ways for each woman. Her goals are “to discover how to reduce each woman’s particular experience of physical discomfort,” and to work with each woman to find long-term strategies to maintain the reduction in physical pain. She has conversations about what is important to her patients, who “practice self-care strategies we develop together. As a team, we don’t have adherence issues with a lifelong management program,” Dr. Brennan says.
Myths About Lymphedema
The Internet is full of misinformation. Because many healthcare providers don’t fully address lymphedema, women who look for help are met with bewildering myths and are often encouraged to obtain expensive products that claim to reduce symptoms. Women who are frustrated, perplexed, and who desperately seek relief from lymphedema often fall victim to false claims.
“I start by talking with my clients about what they can do to manage their lymphedema. First, we cover the myths that are repeated over and over, but that are not fully substantiated by research,” Dr. Brennan says. She lists several myths as just that—unsubstantiated information:
- Airplane travel worsens lymphedema
- Avoid injections into the affected arm
- Avoid blood pressure measurements on the affected arm
- Diuretics can improve lymphedema
- Don’t exercise an area or arm where swelling exists
- Avoid extreme temperatures that can worsen lymphedema
- A compression garment can prevent swelling
- Don’t apply compression during an acute infection.
“Then we talk about what we know is true, based on well-designed research,” explains Dr. Brennan. “We work together…, to find approaches that obtain outcomes most important to them,” she added. She knows this conversation can be difficult, but she knows it is important to engage in heart-to-heart communication about lymphedema as part of the approach to management.
Strategies to Lymphedema Management
Dr. Brennan says that what we know about lymphedema management is nuanced and involves different options that are best explored together with a lymphedema therapist. These include:
- Obesity is a major risk factor; optimal weight management is important
- Lymphedema has a genetic predisposition; therefore, some aspects of this condition are beyond a woman’s control
- Swelling may not occur immediately; it may occur with treatment or years later because of a lifetime risk
- No compression device or elastic arm sleeve is a stand-alone treatment
- Lymphedema increases the risk for infection: infection-prevention is important
- The stiffness of compression is more important than its tightness
- Supermicrosurgery, such as lymphovenous anastomosis or lymph node transplant, is not a cure
- Risk-reduction strategies can help to minimize the risk of breast cancer–related lymphedema, but they don’t prevent it.
“That last truth is demoralizing. Often, women spend hundreds of dollars buying products to try to protect themselves. They are told that if they purchase the best garment on the market, regardless of price, they either won’t experience swelling or the burden of self-management,” says Dr. Brennan. “The medical community is dismissive about the long-term impacts of lymphedema, and has been too slow to educate themselves and their patients about lymphedema management,” Dr. Brennan contends.
“As medical professionals, we have an obligation and a responsibility to help our patients experience greater feelings of healing and well-being around the issues of lymphedema, even as we all accept that we cannot provide them with a cure,” Dr. Brennan emphasizes.
1. Ridner SH, Bonner CM, Deng J, Sinclair VG. Voices from the shadows: living with lymphedema. Cancer Nursing. 2012;35(1):E18-E26.