Your Guide: How a Proactive Cancer Patient Tackles Lymphedema

Patients and caregivers are often consumed in the weeks after diagnosis with learning medical jargon, interpreting data, and understanding their options. Lymphedema is one of many new terms they may hear, and their medical provider may not spend much time discussing this potential post-treatment affliction. Understandably, treating cancer is the priority.

However, lymphedema is a chronic, progressive, and incurable condition and the risk should not be ignored. If your cancer treatment involves removal or damage of lymph nodes, understanding lymphedema can go a long way preparing for and even mitigating the risks of developing a debilitating condition in the months and years following your cancer treatment.

Be Proactive Before Surgery

Understand What Lymphedema Is

Lymphedema is a lifelong disease. It cannot be cured. It most often involves swelling in arms or legs but can also affect the head, neck, trunk, and genital area.  While some people are born with a genetic condition that leads to lymphedema, seven of the estimated 10 million Americans with lymphedema developed it as a result of cancer treatment.

It is caused when a person’s lymph nodes are removed or damaged. This impairs the lymphatic system causing lymphatic fluid to build up in the body.  Pain and fatigue are common with lymphedema.  Swelling can limit mobility and lead to structural change in the affected body part. Impairment of the lymphatic system can affect a sufferer’s immune system and cardiac or neurological health. Lymphedema sufferers are also at a higher risk for social isolation and depression.

Know Your Risk

There is a risk of lymphedema for any cancer patient who has lymph nodes removed or damaged, such as by radiation. While most patients do not develop the condition, medical experts do not yet understand why some patients develop lymphedema and others undergoing the same treatment do not.

Certain cancer patients are at a higher risk for treatments that result in lymphedema. The Lymphatic Education & Research Network offers these estimates for the percentage of patients by cancer type that develop lymphedema:

  • 30% of breast cancer patients  
  • 30% of sarcoma patients
  • 20% of gynecological cancer patients
  • 16% of melanoma patients
  • 10% of urinary cancers patients
  • 4% of head & neck cancers patients

The risk of developing lymphedema never completely disappears after the loss of lymph nodes.  Approximately 80-90 percent of those who develop it, do so in the first year after the loss of the lymph nodes. The remaining cases can develop even years after cancer treatment.

That’s why recognizing the signs of lymphedema is essential for a survivor who loses lymph nodes to cancer treatment.

Have a Monitoring Plan in Place

There are several ways to monitor a patient for lymphedema including circumference measurements, bioimpedance spectroscopy (BIS), water displacement, tissue tonometry, perometer, or lymphangiography. 

Circumference measurement is the most common tool because it’s inexpensive and easy to do. Patients undergoing lymph node removal should have preoperative measurements taken. Regardless of which monitoring strategy used, its important monitoring is overseen by a professional with training and experience with lymphedema.

If this monitoring is not part of your post-treatment or post-surgery plan, you can advocate for it. Monitoring is most crucial during the first year after removal or damage to the lymph nodes. Waiting for the patient to notice and report lymphedema symptoms like swelling, pain, or mobility limitations is not a good strategy. Medical monitoring can allow for earlier intervention and better outcomes.

Research Insurance Coverage

Investigate what your insurance plan will cover for therapy, prosthetics, orthotics, and durable medical supplies. Compression garments are one of the most common treatment tools for lymphedema. Yet most insurance plans—including Medicare—do not usually cover them.  Some plans limit the number of therapy visits or the types of therapy covered. Knowing what your insurance covers will prepare you should the need for treatment arise. Start by reading the Lymphatic Education & Research Network’s guide to insurance coverage for lymphedema.

If You Develop Lymphedema After Cancer Treatment

The Faster You Act, The Better

While there is still much to learn about lymphedema, one thing is certain: the earlier after developing lymphedema you begin treatment, the better the results. While it is incurable, lymphedema progresses in stages. Specialized therapies can not only improve symptoms but also slow the progression of the condition, resulting in a better quality of life for the patient.

Find a Certified Lymphedema Therapist or Other Experienced Professional

Patients who experience lymphedema induced swelling might notice that elevating the affected body part reduces swelling. A medical professional unfamiliar with lymphedema may even prescribe elevation.  While this might reduce swelling temporarily, elevating an affected limb is not treatment.

Treatment can involve compression wrapping or garments, lymphatic drainage massage, and decongestive exercise. In extreme cases, surgery is sometimes an option. While there are ongoing clinical studies into lymphedema treatments, no studies have yet identified an effective medication for treatment.

Look for a therapist or other medical provider with training specific to lymphedema when creating a treatment plan. You may be able to find a Certified Lymphedema Therapist in your area from the Lymphatic Education & Resources Network. Or ask your oncologist for a referral. 

Look for a licensed massage therapist with specialized training in manual lymph drainage. Sometimes referred to as lymphatic massage, this treatment differs from a traditional massage. Instead of manipulating soft tissue like muscles, fascia, and ligaments, the therapist works body areas where lymph nodes are located. They stimulate the flow of lymph with light, gentle pressure. Be aware, not all massage therapists are qualified to perform manual lymph drainage massage.

“While it is legal for a licensed massage therapist to perform lymph drainage, a practitioner who has gone through a certification program will have a greater knowledge of the scientific basis of lymphology, along with the physical handwork skills that are necessary to excel in this therapy,” explained LMT Nicole Anderson. “Most programs are around 135 hours for certification.”

Focus on Healthy Choices

Lymphedema can predispose a patient to skin breakdown, infection, and delayed wound healing. Meticulous attention to skincare and protection are essential to self-management of lymphedema. A small cut or even a sunburn can have significant consequences for someone with lymphedema.  The body produces extra fluid to deliver infection-fighting white blood cells to an injury, but in a person with lymphedema, the lymphatic system will struggle to remove the extra fluid.  The National Cancer Institute offers helpful guidelines for basic preventative self-care for people with lymphedema.

Other things that can exacerbate lymphedema include wearing restrictive jewelry or clothing. Excessive heat can be a problem and people with lymphedema are often told to avoid hot tubs and saunas. Alcohol can worsen symptoms. Air travel can also be a triggering event and people with lymphedema should consult with their medical provider before traveling. Sometimes special compression garments can be worn during travel to lower the risk of an adverse reaction.   

Good nutrition and staying active are also important for mitigating the effects of lymphedema. Regular movement and maintaining muscle tone help lymph fluid circulate and drain. Weight gain makes monitoring and treating lymphedema more difficult.

Educate Yourself

The Lymphatic Education & Research Network and the National Lymphedema Network are both great resources for people with lymphedema or anyone who wants to learn more. They provide educational resources, information about clinical trials, access to local support groups, and the latest research into lymphedema.

Don’t let lymphedema catch you or a loved one by surprise. There is much a proactive patient can do to prepare for and respond to lymphedema. Odds are in your favor you won’t have to confront this condition, but if you do, a little preparation will have a positive impact on your quality of life.