A patient compares her left hand, which has lymphedema, to her right, which does not.
By Pohla Smith Pittsburgh Post-Gazette
Kim Marmarosa says she wishes she could have her body back, but she knows that's not going to happen.
Because of breast cancer, she had a double mastectomy, removal of lymph nodes and radiation about four years ago. She wasn't a candidate for breast reconstruction, but she was a for lymphedema, an incurable but controllable condition marked by swelling. Found usually in an arm or a leg, it's a buildup of fluid caused by a blockage in the lymphatic system.
A year after her cancer treatment, Ms. Marmarosa, 49, who owns an insurance agency and lives in Brighton Heights, developed a less common variety of the condition called torso, or truncal, lymphedema.
The swelling affects her "torso and back, basically, and the arms are included. It's kind of proportional," she said.
It also has affected her emotionally and psychologically.
"It really plays havoc with your body image, to want your body back, the body you're used to," Ms. Marmarosa said. "For a woman, it's not the easiest thing to deal with. When you end up in a different body, it's hard; it's difficult. I think I'm less social."
The lymph system, says Atilla Soran, the surgeon who serves as director of UPMC's Lymphedema Screening, Early Detection and Prevention Program, is "the cleaning lady of the body."
Lymph is the name of the fluid that circulates through the body via lymph vessels, picking up bacteria, viruses and waste products to be filtered through the lymph nodes; the fluid is then returned to the bloodstream.
Either cancer, surgery, radiation or infection in any area of the body near the lymph system can cause the blockage that results in lymphedema. In Ms. Marmarosa's case, she said, it's "chicken or the egg. It's probably from the surgery and the radiation. That's pretty much the thought of it."
There also are several inherited, rarer types of lymphedema known as primary lymphedema, but, Dr. Soran said, the genes that cause them aren't yet known.
He said the highest incidence of lymphedema in the United States, however, occurs in women who have had breast cancer surgery with lymph node dissection and mostly affects the arm. The rate of occurrence is about 25 percent for those who have had surgery; "radiation adds 5 to 10 percent more," he said.
It is treated by various methods collectively called "complete decongestive therapy," says certified lymphedema therapist Suzanne Cavanaugh. All of them have to do with pushing the lymph fluid through the system.
One technique is manual lymph drainage, or massage; others include compression bandaging, compression garments and therapeutic exercises. Certified lymphedema therapists can do the massage and teach the patient how to do it at home. There also are pumps, Dr. Soran said, in which the patient puts her limb and body in a garment, pushes a button and lets the machine do the massaging.
Ms. Marmarosa recently got a machine called a Flexitouch, which simulates the massaging drainage technique. She spends one hour on it twice a day.
Dr. Soran's clinic is designed to help women catch lymphedema before it becomes a life-altering complication. Using a machine that measures extracellular fluid, he takes a baseline measurement before the breast cancer patient's surgery and again afterward. Yearly assessments then are taken for five years, and if there is any change in fluid volume, treatment is started.
"If you can start the whole complement of lymphatic treatment you may never get big swelling," he said. "It won't affect your social life, psychology or quality of life."
Dr. Soran said the clinic sees about 1,200 breast cancer patients per year, 40 percent of whom have the presurgical assessment. The clinic was the first in the world to perform the presurgery measurements, he said, but New York Presbyterian Hospital has recently started a similar program.
The first symptom of lymphedema is a feeling that one arm is heavier than the other. "Then the swelling starts, and if it's not treated, they get an arm infection and also it gets hard, tough," he said. "Then if it's not treated, it gets bigger and bigger."
Ms. Marmarosa has only been using the Flexitouch for several weeks, so it hasn't done much to reduce her swelling. "But, I feel better because the fluid is moving" through the lymphatic system, she said.
Meanwhile, she also expects to feel better psychologically when the Cancer Caring Center joins with Allegheny Chesapeake Physical Therapy to start a lymphedema social support group on May 24. Free to patients, friends, family and caregivers, it will be held at the Cancer Caring Center, 4117 Liberty Ave., Bloomfield, from 6:30 to 7:30 p.m.
"I'm really looking forward to [it]," Ms. Marmarosa said. "I think I'll find out I'm not the only one and find healthy ways of coping ... ways to better explain it to people and my family, ideas I don't have now."
Ms. Cavanaugh will be the facilitator for the sessions, which also will be held at the Cancer Caring Center on June 28 and July 26.
"I've been treating the [lymphedema] population almost 81/2 years; this is a group that really has no support as of yet," Ms. Cavanaugh said. "Our goal is to bring the community together and give educational components, as well as a networking group for those who are touched with lymphedema."
Until then, Ms. Marmarosa has a message for other people with cancer-related lymphedema: "Just don't give up, and realize you're just as lovable in the body you're in.
"All of us are grateful to be alive. Cancer costs all of us something. Sometimes you think you paid the ultimate price -- both breasts, things I can't get back. It sneaks up on you like that. You think, 'I want my body back.' "
Reservations are necessary for the support group sessions: call 412-622-1212.