Health care providers are increasing their knowledge of lymphedema management, but there's still much work to be done. Just ask film and television star Kathy Bates, author of a letter to the editor in a special issue of Rehabilitation Oncology (RO) entirely devoted to the disease. RO is the science journal of the APTA Oncology Section.

Bates' letter, available for free, not only gives an account of her experience with lymphedema after a bilateral mastectomy but also provides insight into how much the patient experience has changed over the decades. Bates explains that her mother experienced lymphedema after cancer surgery in the 1970s, and that, "with no treatment in those days, I watched her spirit defeated as she realized she would have to live with the pain and heartache for the rest of her life."

Given the experience with her mother and another individual she knew who lived with lymphedema after surviving stage 4 melanoma, Bates was well aware of the effects of lymphedema and pleaded with her surgeon to leave as many lymph nodes intact as possible. Bates writes that when her surgeon later told her that he felt it necessary to remove 19 lymph nodes from her right armpit and 3 from her right, she was "devastated" and experienced what she describes as an "emotionally draining" recovery.

Eventually Bates came to terms with the necessity of the node removal, but she now lives with the reality of lymphedema. In the editorial, she writes of her treatment and management of ongoing symptoms, and her more recent work with the Lymphatic Education and Research Network (LEARN), where she now serves as spokesperson.

Bates writes that with an estimated 140 million individuals with lymphedema—some undiagnosed—it's imperative that efforts to educate both patients and providers continue.

"Lymphedema needs to be recognized as a disease that deserves money for research," Bates writes. "We need awareness. …Please help me spread the word."

In an accompanying open-access editorial, guest editor Nicole Stout, PT, DPT, FAPTA, and certified lymphedema therapist from the Lymphology Association of North America, describes the advancements that have been made in both lymphedema management and clinical knowledge among health care providers, but she adds that more needs to be done.

"The true measure of our advancement is in how our patients are impacted by the evolution in the field," Stout writes. "Decreased wait times to access therapy, more knowledgeable therapists, and better and higher-quality materials and treatment devices have emerged in the last decade. However, there are still significant barriers to care and clinical questions that we must set our sights on solving in the next decade," including payment, access to specialty care, and the slow growth of telehealth services.

Still, Stout believes that continued technological breakthroughs and increased clinician understanding could pave the way for significant positive change, writing that "the future is bright, the future is smart, and we must continue to seize on opportunities to advance novel approaches to lymphedema management."