From the NLN Conference

http://journals.lww.com/oncology-times/blog/onlinefirst/pages/post.aspx?PostID=541

DALLAS -- Lymphedema continues to be a side effect of cancer treatment, and even with the best therapy available it is a chronic condition. Dealing with a condition that can be disfiguring as well as disabling weighs so heavily on some patients that they can become noncompliant with therapy, says a clinical psychologist who specializes in the problem. "Patients consistently say that lymphedema is harder to deal with than the cancer was," Elizabeth McMahon, PhD, of Kaiser Permanente in San Francisco, said here at the National Lymphedema Network (NLN) Conference, co-sponsored by NLN and the University of Chicago Pritzker School of Medicine.

In an interview after her presentation, she noted that although cancer patients typically have social support and the disease is usually time limited -- i.e., in the sense that "you have it or you don't, and everyone knows what it is -- most people don't know what lymphedema is, and it's not life threatening the way that cancer is; you survive the cancer and everybody says that's wonderful, but then they want you to move on."

Lymphedema, though, is progressive if not treated, can't be cured, can be visible and disabling, requires constant self care, and is a daily reminder that the patient has had breast cancer -- "It reminds patients that they have a chronic illness, and it carries a negative emotion.

"And so there are patients who don't comply because they feel overwhelmed -- It can feel easier to just give up," said McMahon, who wrote a book on the topic several years ago called Overcoming the Emotional Challenges of Lymphedema.

NLN Founder and Executive Director Saskia Thiadens, RN, though, said that the majority of patients are compliant with therapy: "Once they really understand the consequences of untreated lymphedema, they are compliant, they listen to the therapist," she said. "If they don't [adhere to therapy] then obviously the limb becomes worse and they have to see a therapist again."

Oncologists are in an ideal position to give patients information about lymphedema risk reduction and the importance of adherence to treatment, but they rarely have time to educate patients, said Thiadens, who advocates comprehensive programs for patient education as well as early detection of lymphedema when it is in the subclinical stage and the risk of becoming chronic or progressive can be reduced or avoided.

"In the real world, physicians see the patients quickly, they don't have the time for that."

McMahon said breast cancer patients who are not warned of the risk and who develop lymphedema feel "incredibly angry and betrayed by their surgeons and their physicians" - another reason it is so important for physicians to provide the information.