Posted on September 20, 2022 by Hunter Hulbert - Health

Lymphedema is swelling caused by the body’s inability to move lymphatic fluid. It often falls between the cracks of medical attention, with no single branch of medicine focusing on it. Photo courtesy of Getty Images

It turns out her cancer was the easy part.  

Michelle Sellaro’s lump was small, her mastectomy uneventful. Once chemotherapy and radiation were done, she assumed her ordeal was over.  

The surgical removal of her armpit lymph nodes, combined with radiation, damaged her lymphatic system. Her arm gradually began to swell, becoming so bloated her fingers “looked like sausages,” she recalled.    

She had joined the ranks of the estimated 1 in 5 breast cancer surgery patients who end up with lymphedema, or swelling caused by the body’s inability to move lymphatic fluid from an arm. In addition, patients who have surgery for gynecological cancers can get lymphedema in a leg.   

“When the lymphedema set in, it really freaked me out. I had to go into therapy,” said Sellaro, 58, of Hopatcong. “What bothered me most was when people would say, ‘Look at the bright side: At least you don’t have cancer.’ Then I would start to feel guilty. I would feel like, ‘Oh my God, I’m so vain.’ ”  

Michelle Sellaro has had three surgeries transferring nodes from her hip to her armpit. She estimated the swelling in her arm is down about 70%. Photo by Kathleen O’Brien

Until recently, patients had few options besides physical therapy, specialized massage and unsightly (and expensive) compression bandages. No one offered anything even approaching a cure.  

Now, however, a handful of surgeons in New Jersey are doing lymph node transplants, taking healthy nodes from one part of the body and placing them in the damaged area. New clinical research has demonstrated its effectiveness.  

The lymphatic system circulates lymph fluid, which helps clear the body of toxins such as bacteria and viruses. Remember skinning a knee as a child? That clear, sticky fluid that eventually formed a scab is lymph. A complex system of microscopic vessels connect tiny nodes about the size of a small jelly bean. They are concentrated like grape clusters in the armpits, the neck (the “swollen glands” a doctor checks) and the groin, about where your fingers land when you put your hands in your pockets.  

Unfortunately, that fluid can also carry lethal tumor cells to other parts of the body, which usually worsens the patient’s prognosis. For that reason, surgeons often remove nearby nodes when operating on a tumor.  

When surgery or radiation damages the lymph vessels, fluid backs up in the affected limb. In its mildest form, the condition is unsightly; in severe cases, it can lead to cellulitis — an infection of the skin — requiring a hospital stay.  

Overlooked and underdiagnosed, lymphedema falls between the cracks of medical attention, with no single branch of medicine focusing on it, advocates say. Treatments are thwarted by spotty insurance coverage.  

“A lot of patients we see feel they have a real problem that has been dismissed or minimized,” said Dr. Joseph H. Dayan, a plastic and reconstructive surgeon with Memorial Sloan Kettering who sees patients at a satellite office in Montvale. “The focus is so much on the cancer that it’s invisible. As a consequence, people get a delayed diagnosis.”  

Dr. Joseph H. Dayan, a plastic and reconstructive surgeon with Memorial Sloan Kettering. Photo courtesy of Memorial Sloan Kettering Cancer Center

Relatively new surgeries either move healthy nodes to the damaged site, or connect lymphatic vessels to a nearby vein to bypass the damage. (That very newness means insurance coverage varies from insurer to insurer.)   

In order to be successful, doctors must first determine how to avoid triggering a new case of lymphedema in the area where they removed healthy nodes for transplant elsewhere.   

Dayan uses reverse lymphatic mapping, a process by which dye is injected into the trunk or foot of the patient to see where there are clusters of nodes robust enough for transplant elsewhere. “That has made lymph node transplant so much safer,” he said.  

Surgeons have also started using lymphatic nodes in the abdomen that service the bowels, he said, which can be a safer option.  

According to Dayan, good candidates for lymph node transplant are patients who:  

Sellaro found her surgeon in a roundabout fashion, with an exhaustive internet search pinpointing Dr. Eric Chang, then a plastic surgeon at the cancer treatment mecca in Texas: MD Anderson Cancer Center. She was willing to fly there, but her insurance wouldn’t cover out-of-state surgery, nor would it cover a plastic surgeon she found locally. In a fortuitous coincidence, her insurer recommended someone else: the same Dr. Chang, who had just returned to his home state of New Jersey to set up his practice.  

Dr. Eric Chang, a plastic surgeon who specializes in cosmetic surgery and reconstructive microsurgery. Photo courtesy of The Plastic Surgery Center

Chang, who grew up in Morris County, said his mother had breast cancer when he and his twin brother were babies, and ended up with mild lymphedema in her arm. “We saw her dealing with this ever since we were little,” he said.   

This type of surgery is dubbed “super microsurgery” because it involves connecting vessels that are narrower than a millimeter. The sutures are thinner than a strand of hair, Chang said.  

Sellaro has had three surgeries transferring nodes from her hip to her armpit. She estimated the swelling in her arm is down about 70%. She still wears her compression sleeve at times, but is able to resume the heavy landscaping — hardscaping — that is her favorite hobby.   

“It robbed me of things I loved to do. I was resentful. I was angry,” she said of the lymphedema she endured before her surgeries. “Now it’s still a part of me, but it doesn’t define me.”  

Lymphedema can strike the legs as well, where gravity makes it a tougher challenge. The cause is often surgery for gynecological cancers, which impact the nodes in the groin.  

Another patient of Chang’s, Corrina Smith, sought the advice of countless doctors for the enormous swelling in her leg — swelling that meant the only shoes she could wear were Crocs. Her lymphedema was a side effect of surgery and radiation to remove a noncancerous tumor in her thigh.  

With her leg ballooning to the size of a tree trunk, rendering her knee unrecognizable amid the extreme bulk, she was desperate.   

“I even had one specialist tell me I should just amputate my leg. I was just like, ‘No! There has to be help for this!’ ” she recalled. With her body unable to fight infections in the limb, a simple cut could land her in the hospital for a week.   

Corrina Smith’s lymphedema was a side effect of surgery and radiation to remove a noncancerous tumor in her thigh. Multiple surgeries helped reduce her leg to a more normal size. Photos courtesy of Corrina Smith

Eventually she found Chang, who performed a 12-hour surgery on her in which lymph nodes from her neck were transplanted to her foot. That, followed by several rounds of “debulking” surgery that included excess skin removal as well as a specialized type of liposuction, has returned her leg to a nonfreakish size.  

When she was finally able to wear a pair of regular sneakers — New Balance EEEE width — she said her whole family celebrated.  

Smith, a 45-year-old analyst for the U.S. Department of the Treasury, now lives in Calvert County, Md., but traveled to New Jersey for her surgeries.    

“He gave me my life back,” she said of Chang and the surgical solutions he offered. “I can wear pants again!”  

Corrina Smith, a 45-year-old analyst for the U.S. Department of the Treasury, now lives in Calvert County, Md., but traveled to New Jersey for her surgeries. Photo courtesy of Corrina Smith

Both surgeons cautioned that improvement doesn’t happen overnight. Chang said patients probably won’t see progress for a minimum of three months, and it may take up to a year for them to achieve their “new normal.”   

Nor is surgery a complete cure. Patients may still have to wear compression garments and remain vigilant about injuries — bug bites, cuts or burns — that can prompt a surge of lymphatic fluid.  

Dayan’s latest research study has shown a solid improvement in the quality of life for patients, with reduction of limb volume, a lower incidence of cellulitis and less need for compression garments.   

It’s for that reason patients who have had the surgery say they are anxious to get the word out. “I hope it can help someone else who is suffering from this chronic lifelong and life-altering condition,” Smith said, “so they know that there is hope and new treatment available.”  

Kathleen O’Brien was a longtime columnist and health writer for The Star-Ledger. She continues to report on all facets of the health care industry for Jersey’s Best.

This article originally appeared in the Fall 2022 issue of Jersey’s Best. Subscribe here for in-depth access to everything that makes the Garden State great.

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