Mei Fu



Learning About Lymphedema in Breast Cancer Survivors

Research With a Human Face

The good news is that more women than ever are surviving breast cancer. The bad news is that 40 percent of the survivors – 2 out of every 5 women – will be stricken by a secondary, chronic condition called lymphedema. Lymphedema has been known to develop up to 15 years after treatment and all breast cancer survivors face a lifetime risk of developing this disease. Painful and debilitating, there is no cure for lymphedema.

The reasons for developing this condition are well-known to health care professionals and fairly straightforward. Removal of lymph nodes followed by radiation therapy can, “…cause the capacity of the lymphatic capillaries to be reduced leading to stagnation of high molecular weight proteins in the interstitium...”[1] -- the first step in developing secondary lymphedema.

Lymphedema usually starts with swelling and tingling in the affected arm but can quickly move to hardened lymph nodes and thickened skin with scaly deposits of keratinized debris. Recurrent bacterial and fungal infections are common. In severe cases, lymphorrhea, leakage of lymph onto the surface of the skin, can occur.

Dr. Mei Fu, an Assistant Professor at the College of Nursing, New York University, first witnessed the physical, emotional and sociological toll that secondary lymphedema exacts from breast cancer patients as a nursing student on a rotation in Oncology. “I saw breast cancer patients who came to the clinic with arms – hurting, heavy and all the Oncologists could say is I’m sorry,” says Dr. Fu, who now holds 7 degrees including PhD, RN, APRN-BC, MS, MA, BS, BA. “When the oncologist left, the patient would tell me sorry doesn’t help me. Tell me what I can do.”

This plea for help led Dr. Fu to spend the entire summer between earning her Masters in Science and starting her doctoral studies, researching secondary lymphedema. “I read every single article and book about lymphedema. I realized there is nothing done to treat lymphedema,” Fu said. “I decided I had to do something about it, something for these women, but all I had were questions. I couldn’t get answers because there was no data.”

Questions with no answers led Dr. Fu to focus her PhD studies on the efficacy of treatment for secondary lymphedema but she started this quest with a basic problem. While there was no hard and fast data about lymphedema treatment, anecdotal reports indicated that patients who practiced post- operative self care like manual massage, compression sleeves and elevation, showed a lower incidence of lymphedema. But not all patients followed the protocols.

“People don’t want to do compression sleeves or massage 3 times a day. They don’t want to elevate their arms.” What they want, Dr. Fu says is, “…a pill which can relieve lymphedema. But what we have learned is that a pill doesn’t really help. You have to make lifestyle modifications in order to effectively control this disease.”

If lifestyle changes like massage and elevation could be used to control and even prevent lymphedema from starting, why weren’t patients practicing them? At the heart of this question is intent – does a patient intend to follow the prescribed treatment path? Intent is something multi-national pharmaceutical companies have been trying, unsuccessfully, to determine for years.

Dr. Fu knew that intent had to be the center of her research. But how could she succeed where pharmaceutical companies failed? And what methodology could she use that would be effective? “I knew I had to take a qualitative approach,” says Dr. Fu. “But I wasn’t sure how.” Then she got lucky. She attended a lecture by Dr. Eileen J. Porter, PhD, a professor at the University of Missouri and one of the leading authorities on a research methodology called phenomenology.

The lecture led Dr. Fu to another round of research. “For 2 months I read all about phenomenology - looking at human experiences which are not random but have essential structures with them.” Phenomenology relies heavily on face-to-face interviews as a method of data gathering, an approach Dr. Fu was uniquely qualified to use because of her background in the humanities and arts coupled with her years of study and theses research.

Dr. Fu approached Dr. Porter for support and, with her guidance, wrote a grant request to the NIH. In 2001, the grant was funded and Dr. Fu has not slowed her quest since. For the past 6 years, with the help of grants like the most recent once from the Avon Foundation, Dr. Fu has been learning why some survivors adopt recommended risk reduction behaviors and why some don’t.

Dr. Fu thinks the biggest obstacle for most patients is the effect of the diagnosis, itself. “When you are diagnosed with breast cancer everything is focused on am I going to survive? We think breast cancer diagnosis is just a survival issue,” Dr. Fu pauses then adds, “Most patients I interviewed say if someone would just sit with us and discuss this disease with us, we would never have lymphedema.“

This, Dr. Fu says, is where nurses can really make a difference starting immediately after the diagnosis of breast cancer, through treatment and in follow-up care. “Nurses are important because we are the ones with the intimate connection with patients,” explains Dr. Fu. “And nurses have a lot of opportunities to empower our patients with knowledge and behavior modification. Nurses can focus on risk prevention.”

A nurse, herself, Dr. Fu understands that changing a mindset from straightforward surgical treatment to ongoing treatment and patient support will not be an easy sell especially if the new initiative requires education, individual consultation and ongoing patient contact. How will Dr. Fu help to make it happen? Once again, research will play a pivotal role.

With her latest grant, Dr Fu plans to “…determine how to implement risk reduction behavior in breast cancer patients along three lines of thinking -- seminars for health care professionals, individual patient consultations and a program of continuous encouragement – 6 months – 12 months and 18 months after treatment.”

If the last 6 years of Dr. Fu’s life are any indication, this 45 year old nurse will create the protocols, the training materials and the incentive to make the threat of developing secondary lymphedema an exception in the lives of breast cancer patients instead of the rule.

Lymphedema Statistics[2]

|Overall Incidence Post Surgery |26% |

|Incidence 0 to 2 years Post Op |23% |

|Incidence >15 years Post Op |45% |

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[1] “Lymphedema.” Dr. Don R. Jevis, Jr. MD, Retrieved 1/21/2007 from .

[2] “Lymphedema PDQ for Health Professionals.” National Cancer Institute, Retrieved 1/24.2007 from .

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