Preventing Lymphedema: What Patients Need to Know

Seven years ago, Academy Award winner Kathy Bates was diagnosed with breast cancer. Along with a double mastectomy, her surgeons removed 19 lymph nodes from her left armpit and three from the right. Because of this, she developed lymphedema, a condition that causes fluid buildup typically in an arm, hand, breast or torso after surgery for breast cancer.

This common complication causes painful and debilitating tightness and swelling and can lead to even more serious conditions including pain, recurrent infection, reduced mobility and impaired daily function.

Understanding Lymphedema

Kathy is profoundly grateful to have her life and to be cured of cancer, but she struggles with a lifelong condition that medical experts now consider preventable. Thanks to innovative technology called bioimpedance spectroscopy, a non-invasive 30-second test can help detect lymphedema in the earliest stages, before swelling is detectable, when it can be stopped or reversed. While the words “bioimpedance spectroscopy” may sound intimidating, this is a quick, painless test that can be a real life-changer for anyone who has had their lymph nodes surgically removed as part of their cancer treatment.It’s an eye-opener: there are nearly 17 million cancer survivors in the United States. Depending on the treatment required for their cancer, up to one in three will develop lymphedema related to their cancer treatment.

For all cancer survivors, particularly many women who have undergone a surgery and/or radiation treatment with lymph node removal in the fight against breast cancer, lymphedema can be devastating. Unfortunately, most cases are not diagnosed until they are visually apparent, which delays treatment that could keep the condition from getting worse.

Lymphedema usually develops gradually and may cause an unusual sensation — such as tingling or numbness — that comes and goes before any visible swelling occurs. Other common symptoms include achiness, feelings of fullness or heaviness, puffiness or swelling and decreased flexibility or tightness in the hand, arm, chest, breast or underarm areas. Early treatment of lymphedema is important, so if you are a cancer survivor you should tell your doctor if you experience any of these symptoms.

When lymphedema is caught early, treatment can be managed at home with standard compression therapy. However, more severe cases of lymphedema require extensive treatments including physical therapy, compression devices or even surgery.

Patients who know someone with chronic lymphedema can become terrified of developing the condition because they’ve seen its devastating impact. In fact, many refuse to have even one lymph node removed out of fear of developing lymphedema. On the other hand, many patients are not familiar with the condition at all.

What Breast Cancer Survivors Should Discuss with Their Physician

Keep in mind that despite a remarkable increase in the depth of our scientific understanding and management of breast cancer, doctors have historically downplayed the impact of lymphedema because the treatment emphasis was purely on ensuring that patients survive their cancer. As our understanding has improved, physicians are placing greater emphasis not only on survival, but on addressing factors that impact quality of life.

The first step toward educating yourself about lymphedema is to discuss it with your physician. Here are a few questions that you can use to begin the conversation and some brief answers to accompany them:

• I have just been told I need breast cancer surgery. Is it too early to think about the possibility of lymphedema?

No, it is not too early. The earlier you address the possibility the better the likelihood that it can be prevented. Baseline measurements including bioimpedance spectroscopy should be taken before surgery for later comparisons to facilitate earliest possible detection of fluid accumulation.

• I’ve been given a lot of information about lymphedema but am not sure it is accurate. Who can I trust?

Triggers and Risk Factors of Lymphedema

You should always discuss everything with your physician. For example, some women mistakenly believe they caused lymphedema by wearing a shoulder bag over their arm, from playing basketball, or even from the way they held a baby in their arms. It comes as an unbelievable shock to many patients with lymphedema to learn that commonly cited causes of lymphedema like airplane flight, physical activity, blood pressure measurements, IVs and more are not actually associated with increased risk for lymphedema. The bottom line is that many women have been shamed or blamed for developing lymphedema when, in fact, it is the result of their treatment and, until recently, lack of accurate dissemination and application of scientific information.The only known triggers for lymphedema are infections and perhaps saunas or hot tubs. Therefore, it’s important to avoid saunas and hot tubs, wear gloves when gardening and ask your physician about taking antibiotics if you have a cut or scratch.

Preventing Lymphedema

Your physician can also tell you about risk factors for the development of lymphedema including the extent of lymph node surgery, radiation, taxane-based chemotherapy and heart disease. Weight management and exercise are known to reduce the risk of lymphedema.Lymphedema swelling is reversible if caught at its earliest stage, before tissues start to lose their elasticity, when it can be treated with at-home care including appropriate compression therapy. If patients wait for symptoms to seek lymphedema treatment, it might be too late to effectively reverse it. Many patients don’t experience symptoms until swelling has developed. Because of the time it takes to see the doctor, many patients do not receive treatment until it is too late to prevent chronic lymphedema. In order to catch lymphedema in time, at-risk patients must be routinely monitored with technology like bioimpedance spectroscopy.

Interim results from an important clinical study taking place in the United States and Australia called the PREVENT trial suggest that bioimpedance spectroscopy can detect early signs of lymphedema compared with a tape measure, the traditional approach to measuring lymphedema onset or progression. Bioimpedance spectroscopy assessment generates the L-Dex score, which is an index of lymphedema development in an arm or leg. In fact, the study suggests that 95 percent of breast cancer-related lymphedema progression is preventable with routine surveillance by tracking the L-Dex score followed by at-home compression sleeve therapy when early lymphedema is detected.

This means that cancer survivors can avoid facing the symptoms of lymphedema swelling, mobility issues, hospitalization for infections and time-consuming daily care regimens.

With routine L-Dex measurements using BIS, combined with appropriate intervention, cancer survivors can prevent lymphedema and now more than ever, look forward to improved health outcomes and enhanced quality of life.

Dr. Pat Whitworth is a breast surgical oncologist and the director of the Nashville Breast Center.