Updated: Sunday, October 4, 2015, 2:50 AM
Deb Gleason has had surgery for breast cancer twice. She had breast-sparing surgery on her left side in 2000 and a double mastectomy in 2012 when cancer returned on the right.
Cancer-wise, she's had a clean bill of health since, but the second procedure left her with a miserable, incurable side effect that plagues millions of cancer survivors: lymphedema.
The condition, caused by disruption of the body's lymphatic system, causes arms or legs to swell with fluid and fat. Until the last five years or so, the only treatments available to most patients included a combination of specialized massage, exercises, and compression garments.
Gleason got it in her right arm. She was lucky to avoid pain, but she couldn't fit into her clothes and had to wrap her arm each day in ACE bandages, starting with each individual finger and continuing to the armpit.
"It was very, very annoying," said Gleason, 64, of Telford. "I can tell you I hated that wrapping. I hated it."
That explains why Gleason was eager to try a newer way of treating lymphedema: surgery. Sameer Patel, a plastic surgeon at Fox Chase Cancer Center, transferred healthy lymph nodes from her groin to her armpit, replacing nodes that were removed during her mastectomy.
Just a trace of swelling remains. "I've had remarkable results," she said.
Gleason is among the pioneers trying new surgical techniques, though results range from big improvements to no change. In addition to lymph node transfers, surgeons are doing "bypasses," which redirect built-up fluid into blood vessels.
Two hospitals in this area perform the procedures: Fox Chase and the Hospital of the University of Pennsylvania (HUP). HUP plastic surgeon Suhail Kanchwala, who started doing them about three years ago, estimates fewer than 20 facilities in the country have each done 20 or more bypasses or transfers.
Some surgeons are also doing a liposuction-like procedure to remove the solids that build up in patients with lymphedema.
Saskia Thiadens, executive director of the National Lymphedema Network, said patients and doctors need clinical trials and long-term results to evaluate the new treatments. And, she said, "anybody who has surgery needs to be monitored very closely, not only by the surgeon, but by a lymphedema therapist as well."
We have lymph nodes all around our bodies. They are brownish and look like peanuts, Patel said. Those in our necks can swell when we get an infection. The nodes are part of an alternative plumbing system that collects and processes fluid that leaks from blood vessels and fat from our intestines. Eventually, it dumps the liquid - called lymph - into a vein near the heart.
The nodes themselves are a key part of our immune system. They identify and analyze invading bacteria and viruses so other parts of the system know what - and how - to attack, Kanchwala said. They are among the first places where some cancers spread. That's why surgeons often remove them.
The trend toward sentinel node biopsies in breast cancer surgery that began in the late 1990s has greatly reduced the number of nodes removed from many women. It targets the first nodes into which a tumor drains. But some patients still lose a lot of them, and some can get lymphedema when only one node is taken.
Patel said 4 percent to 17 percent of women get lymphedema after sentinel node biopsies, compared to 24 percent to 49 percent of those who lose all the underarm nodes.
Lymphedema is also a common side effect for people treated for gynecological, prostate, and head and neck cancers as well as melanoma.
Doctors said cancer survivors are living longer and getting more radiation, another risk factor for lymphedema. Lymphedema often begins soon after surgery, but it can also emerge years later.
The swelling and the constant, time-consuming attention lymphedema requires are painful reminders of cancer. When nonsurgical techniques don't work, patients' limbs can grow very large and hard.
"People say you're lucky to be alive and what are you complaining about?" said Constance Chen, a New York surgeon who is studying lymph node transfers.
"There are people that can't work. They can't wear normal clothes. It's incredibly debilitating and depressing for people."
The surgical treatments are the province of plastic surgeons, who are skilled at moving tissue from one part of the body to another. Few doctors do them, practitioners said, because the microsurgical techniques required are technically difficult and use specialized equipment.
The bypass is a slightly older procedure in which a lymph vessel near a disrupted part of the lymphatic system is surgically attached to a blood vessel, giving trapped lymph a place to flow. It can have a quick, dramatic effect, surgeons said, but Kanchwala worries the connection can clog eventually.
In the transfer, a clump of lymphatic tissue is harvested from the groin or neck. The site is chosen carefully to avoid new lymphedema. Surgeons then transfer this to a limb that needs drainage. The surgeon attaches blood vessels in the transferred tissue to nearby vessels to provide a blood supply. When things go right, lymph vessels in the transferred tissue grow and find a way to hook up to the system. It may be months before patients see results.
Surgeons say they get similar results from bypasses and transfers. They sometimes do both in the same patient.
Data are sparse, but doctors who perform the surgery said a majority of patients say they feel better. Surgeons said they sometimes cannot see or measure these differences, but patients tell them an arm feels lighter or softer. It is impossible to predict who will do well, although obese patients and those with more severe lymphedema are not good candidates.
Patel estimates that 50 percent to 60 percent of patients get a measurable response. Kanchwala says one-third get a measurable change in limb size. A third get no change. The rest report improvement that may not be visible.
Matthew Hanasono, a plastic surgeon at the University of Texas MD Anderson Cancer, one of the first institutions to test the procedures, said 10 percent to 20 percent of patients return to normal and 70 percent to 80 percent report at least some improvement.
"The results are continuing to improve as we get more experience," he said.
Jay Granzow, a UCLA plastic surgeon, said that for patients with the most severe lymphedema, reducing fluid isn't enough because much of the swelling is caused by fat that builds up in the affected tissue. He said he had gotten good results from suctioning out excess fat and fibrous tissue - it looks like curdled milk - in a process called suction-assisted protein lipectomy. Patients must continue to wear compression garments forever. In some cases, he does a bypass or transfer later, but he says patients likely still need compression.
Surgeons agreed the treatments significantly reduce the odds of infection, a huge issue for people with lymphedema. Patients can end up in the hospital after bug bites or tiny punctures to the affected limb.
A paper cut sent Noreen Saggese, a breast cancer survivor from Sewell, to the emergency room with cellulitis, a bacterial skin infection. Another infection from a manicure put her in the hospital for four days. "The infection went lickety-split all the way up my arm into my left breast and across my chest," she said.
Her doctor sent her to Kanchwala for a transfer because he was afraid an infection would kill her. She had the procedure in July. Her range of motion has already improved and the affected arm is a little smaller. "I don't have any heaviness or tight feeling any more," she said.
Chen, who is leading a clinical trial of the bypass, is torn between patients' obvious need for help and her frustration with the unpredictable results.
"I am really struggling with whether or not to continue doing it," said Chen, director of microsurgery at the New York Eye & Ear Infirmary of Mount Sinai. "When people ask me about it, I am very honest about it. I tell them it is not a magic bullet. You need a lot of therapy afterward."
Other doctors are more enthusiastic but warn patients they may not benefit.
"This surgery is never going to replace lymphedema therapy, and I'm very careful to tell patients it's not a cure," Kanchwala said.
Nonetheless, Tonya Miller, a Fox Chase patient from Tacony, is a fan. She had painful lymphedema - she called it her "big arm of waste" - and was prone to infections before her lymph node transfer two years ago. She said she noticed improvement quickly. Her left arm, which had been 24 percent bigger than the right, is now only 2 percent bigger.
"It's totally amazing," she said.
Read full story: Surgeons take on a vexing consequence of breast cancer treatment