Their offices at Magee-Womens Hospital of UPMC are attached, so whenever she saw her surgeon, Candace McGuire, breast cancer survivor Ellen Gainer went next door to another UPMC program to be screened for lymphedema, using a technique designed to stop swelling before it gets bad enough to interfere with the use of her arm.
Lymphedema is a buildup of fluid caused by a blockage in the lymphatic system that results in a painful and incurable but controllable condition marked by swelling that is usually found in an arm or a leg. Cancer, surgery, radiation or infection in any area of the body near the lymph system can cause the blockage that results in lymphedema, but in the United States it is most often associated with breast cancer.
Ms. Gainer, 47, of Whitehall, who works in the health and welfare department of U.S. Steel Corp., underwent chemotherapy and then a lumpectomy and surgical removal of 20 lymph nodes, six of them cancerous, in February 2011. She had her first screening on the machine called an L-Dex for a baseline measurement of her lymph fluid the day of her surgery. She subsequently underwent radiation.
"The amount of fluid kept getting larger with each measurement, so after the fifth measurement they said maybe you should see Dr. [Atilla] Soran," she said.
Dr. Soran is a surgeon and director of UPMC's Lymphedema Education, Screening, Early Detection and Prevention Program.
When he began it in 2010 under an $80,000 grant from the Magee-Womens Hospital Volunteer Service Board the program was the first in the world to do screenings with the L-Dex, which, he said, is the only device approved by the Food and Drug Administration to test patients for lymphedema. Manufactured by ImpediMed, it uses electrodes that run on low electrical frequency and work something like an EKG to measure the lymph fluid, which 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.
When the L-Dex measures fluid levels on a scale of more than the normal range of minus 10 to 10 units, the condition is called lymphedema even if there are no easily seen signs of the disorder and treatment is started. That way the lymphedema can be caught before it is painful and disabling.
"The goal is to catch volume change before the clinical lymphedema appears," Dr. Soran said. "If you can catch them early, the incidence [of lymphedema] changes from 25 percent to 7 percent. There's less pain, less swelling, less cost, better quality of life. ... When we catch these, the patient can start early therapy, simple exercise, diet, garments and will be OK for a very long time."
Exercise, diet for those with a body mass index over 30 and compression garments are standard treatment for patients with lymphedema. Other treatments include laser therapy and compression pump therapy, which comprises intermittent, sequential pumps with chambers that inflate one at a time while moving up the limb, facilitating the movement of lymph fluid.
Ms. Gainer had some arm swelling by the time of her fifth screening was diagnosed as stage 1, grade 1 lymphedema, she said. She was prescribed physical therapy, self-massage and then laser therapy. She also wore a compression garment on her arm intermittently. "I did my first therapy for three times a week for three weeks in February 2012 and then off for eight weeks, then for three times a week for three weeks," she said. "Then I had a follow-up with Dr. Soran, and there was no swelling in my arm. I was downgraded to stage 0, and he said to keep an eye on me so I go back in a year." She still wears the garment periodically.
Although frequently not diagnosed, there will be more than 60,000 new cases of lymphedema in the U.S. each year out of 230,000 new breast cancers, Dr. Soran said. In Pennsylvania, there are more than 2,000 cases of lymphedema yearly out of more than 10,000 new breast cancers, he said.
Since starting the screening program, Dr. Soran and his personnel have done about 900 measurements, "and even if there's a short-term follow-up, we catch around 14 percent of patients without clinical lymphedema, and then we start early therapy," he said.
Unfortunately, the grant that covered the L-Dex and the automatic screenings of breast cancer patients through 2011 has run out, he said, leaving many patients with no insurance coverage. UPMC insurance covers the screenings, "but, unfortunately, most [insurances] are not covering reimbursement, so patients have to pay or are refusing to get the measurements. So now our numbers are going down, and we'll see more with severe lymphedema." Nevertheless, all patients are being offered the screenings.
Under the protocol, the patient is screened before the surgery, every three to six months over the next year, and every six to 12 months for five years. The cost is $200 per measurement, Dr. Soran said.
Theoretically, the screenings should continue for the rest of a patient's life as the risk of developing lymphedema diminishes but never goes away.
"Seventy-five percent of lymphedema [cases] may be diagnosed in five years," Dr. Soran said. "Twenty five percent is the lifetime risk ... [it] would be better to measure for a lifetime."
Ms. Gainer believes her screenings were covered by the grant but says she'll continue to have them even if she has to pay for them herself.
"I would still be fine with that. I want to be sure I catch it before it becomes a problem," she said.
She also said she would re-commend the screenings to "anyone that's experiencing any kind of symptoms. It's painless."
Pohla Smith: firstname.lastname@example.org or 412-263-1228.