Treating lymphedema

New service line gives patients control over their lymphedema

by Michele Berhorst  •  April 6, 2021

The SOZO machine allows for early detection of lymphedema by providing a snapshot of fluid status and tissue composition in just 30 seconds.

Approximately 20% of breast cancer survivors* will develop lymphedema in their upper extremities following surgery and/or radiation treatments. The condition occurs when there is inadequate lymph fluid drainage from the body, which builds up under the skin and causes swelling. Lymphedema can also bring many physical and psychosocial effects that limit or even prevent activities of daily living. “Individuals with lymphedema can face a lifetime of pain, decreased range of motion, stress and sleep disturbance from the swelling. It also can affect their relationships, participation and sense of self-worth,” says Sarah Mecadon, MOT, OTR/L, CLT, who treats lymphedema patients as part of a new service line offered through the Milliken Hand Rehabilitation Center. “There is no cure for lymphedema, and sometimes it’s hard for patients to hear they will never be back to 100 percent. However, we can significantly improve their prognosis by teaching them how to manage the condition, improve their quality of life and help them to have a more body positive attitude about themselves.”

The service line began last year with the arrival of Justin Sacks, MD, MBA, chief of the Division of Plastic and Reconstructive Surgery at Washington University School of Medicine. Sacks specializes in reconstructive surgery following post-traumatic injury and oncology surgery, including breast reconstruction and lymphedema surgery. “Once Dr. Sacks heard about our breast cancer rehabilitative services, he reached out to us about having a certified lymphedema therapist (CLT) on staff so we can treat patients all in one place,” says Mecadon. “While multiple disciplines can become CLTs, occupational therapists look at how lymphedema affects the various aspects of someone’s daily life beyond just the physical challenges.”

It took about a month for Mecadon to complete the CLT training. She also received training to use the newly acquired SOZO® machine, a noninvasive bioimpedance spectroscopy device that helps assess secondary lymphedema and provide a snapshot of fluid status and tissue composition in less than 30 seconds. “The SOZO provides baseline measurements pre-surgery and detects the fluid changes post-surgery while it’s still in a reversible stage. It detects the fluid increase well before I would see a change in arm circumference using a manual tape measure,” Mecadon explains. “If the levels increase to a certain amount, it triggers us to begin treatment with massage, manual lymph draining and bandaging to bring the patient back down or close to their baseline. It also helps patients feel better when they see the numbers decreasing. They know the treatment is working. ”

Mecadon typically sees patients four to five days a week when they start lymphedema therapy, based on their diagnosis and presentation. After a couple weeks, the therapy can be reduced to two to three times a week until enough limb reduction is achieved so that the patient can be fitted for compression garments. “Unfortunately, insurance doesn’t cover the cost of compression garments, which need to be replaced every six months. Individuals with lymphedema may need to wear them for the rest of their lives,” Mecadon explains. “They can also be self-conscious about wearing compression garments in public. The good news is now the garments come in a variety of colors, patterns and styles so they are less noticeable. Plus, having those options helps normalize lymphedema and improve a person’s confidence when they are out and about.”

Helping people change their perspective about living with lymphedema is one of the reasons Mecadon was drawn to this line of care. “It’s rewarding to give a patient that sense of control back. So much of the primary focus of their healing journey is on the cancer and the treatments that secondary conditions like lymphedema are just accepted as a side effect of cancer care.”

Recently, Mecadon treated a patient with severe, stage 2 lymphedema resulting from cancer treatments years ago that put him into remission. “He had never even heard of lymphedema therapy when he was referred to our clinic. With conservative management, we saw a significant reduction in his lymphedema. So much so, I was able to transition him to a home program where he uses a pump and compression to self-manage his lymphedema,” Mecadon shares. “Now, he is doing better and is happy with his arm size. It’s been a life-changing experience because his mobility is not as restricted.”

Sacks is currently in the process of establishing a Center of Excellence for the Diagnosis and Treatment of Lymphatic Diseases (LD) at Washington University. The center would provide not only comprehensive, multi-disciplinary clinical services to families, but also education, advocacy and research opportunities to the LD community.

“Our Center of Excellence at Barnes-Jewish Hospital at the Washington University Medical Center will treat the full spectrum of LD. We will use multi-modal approaches to treat lymphedema with medical therapy, physical rehabilitation and new innovative surgical therapies such as lymphovenous bypass, lymph node transplant and reductive procedures. This will benefit not only patients in St. Louis, but those in the state of Missouri and in the greater Midwest. We are very excited to be collaborating with the Milliken Hand Rehabilitation Center,” Sacks says.

Mecadon and colleagues are reaching out to other oncologists, radiation oncologists and departments in the WashU Physicians network to build their referral network so that more patients can receive preventative care for lymphedema.

“While we currently offer lymphedema therapy at both of our locations, we want to expand services to include SOZO-guided treatment at our Chesterfield location in the next few years and hopefully certify more therapists to treat lymphedema,” Mecadon says. “No other hospital in St. Louis is offering this type of program, so it’s exciting to be on the cutting edge of something that can help improve lives, self-image and prevent further comorbidities.”

*Source: https://cancer.gov/about-cancer/treatment/side-effects/lymphedema/lymphedema-hp-pdq