What is lymphedema and how to people get it? – Deseret News

It started as a swollen arch on her foot and Ashley Hodges, 60, of Fruitland, Utah, could not figure out how she’d hurt it. When the swelling didn’t go down, she eventually went to a foot doctor, who thought the problem might be vascular.

About that time, her parents needed help clear across the country, so she put it on the back burner, but as she drove out to help her parents, her entire right leg swelled up into her groin and lower abdomen. Clearly not a foot problem.

Her family doctor suspected lymphedema, a diagnosis an ultrasound later confirmed. She had a malady few people know about, including many doctors.

It’s not that it’s uncommon.

The Lymphatic Education & Research Network (LE&RN) reports up to 10 million people in the U.S. alone suffer from lymphedema and lymphatic diseases and that’s likely an undercount.

That’s more than from multiple sclerosis, muscular dystrophy, amyotrophic lateral sclerosis, Parkinson’s and AIDS combined. Seven million of those cases are related to cancer and its treatment.

Col. Susan Fondy, an Army flight surgeon whose 20-year career culminated with a three-year assignment as the chief surgeon of the Army National Guard before she retired to Frederick, Maryland, said when she was diagnosed with breast cancer, she took a LE&RN eight-hour course designed for medical professionals “and learned a ton.”

She was told the “weird tightness” in her armpit within a couple of weeks of cancer surgery was normal. When it turned into full-blown lymphedema, she realized how little the medical community knows about it.

She said when she was in medical school, lymphedema was about a 15-minute discussion, despite how often it afflicts people. Including her. Her own cancer was found at the end of her fourth deployment — “ one of those welcome home, you have cancer kind of things.”

A cancer ‘souvenir’

Tissue swells when protein-rich fluid that’s supposed to drain through the lymphatic system instead accumulates, sometimes in shocking amounts. Google the condition and there are photos of legs as big as normal torsos or ankles grown to the size of cantaloupes.

Risk depends in part on the type of cancer. Seventy percent of head or neck cancer survivors will develop lymphedema that can entirely alter their appearance. Lymphedema will impact 30% of breast cancer patients, 30% of sarcoma patients, 20% of those with gynecological cancer, 16% with melanoma and 10% with genital urinary cancer. All forms of cancer treatment, including for prostate cancer, can lead to lymphedema.

There’s also a rare inherited form, different from the acquired, “secondary” lymphedema that can happen to anyone at any age, according to the National Library of Medicine. Swelling can occur in arms, hands, legs, feet, breast, chest, shoulder, pelvis, groin, genitals and face/mouth tissues. It can steal range of motion and discolor skin or cause pain, and alter sensation and limb heaviness. Sometimes clothes no longer fit.

Actress Kathy Bates survived both ovarian and breast cancer and became a spokesperson for LE&RN. She calls the condition a “souvenir of cancer” that is “chronic, debilitating and currently permanent swelling.”

In a video, she tells people with cancer to ask their medical team how it plans to reduce the risk of lymphedema during cancer treatment. She also tells them to learn the early signs, which include tingling and slight heaviness. Lymphedema is not deadly, though it can lead to infections that can be.

It is instead frustrating, disruptive, uncomfortable and incurable.

Hitting brakes on research

Lymphedema is a stark example of what happens when medical research is deprioritized, advocates say.

William Repicci, president and CEO of LE&RN, sighs heavily as he discusses the roller coaster that has been research funding for lymphedema and other lymphatic diseases.

Getting funding for research has been like clinging to a coaster’s rails with your fingers and toes and inching forward manually, then jumping into the car at the top, only to plunge to the bottom.

Last month, researchers at the biannual Lymphatic Forum that LE&RN hosts said their grants had been canceled. Others said all research funding to their universities had been held up since March or April; whether it will be released is unknown. If money’s not released by August, research programs will start to close, Repicci said.

Studying lymphedema provides insight into other diseases with lymphatic system ties, including diabetes, heart disease, Alzheimer’s, multiple sclerosis, rheumatoid arthritis, Repicci said. “So when we pull back from research, it’s not just a matter of ignoring the needs of those people who have incurable lymphedema or the tens of thousands of children born with lymphatic malformations. It goes much further than that.”

For lymphedema research funding, the hits just kept on coming. LE&RN had lobbied hard to be part of the CDC’s Chronic Disease Education and Awareness program, which gets a lot of the public health giant’s attention. Their three-year grant resulted in more than 500 people a day visiting their virtual resource center to learn how to talk to their family and doctors about the disease. In October 2024, LE&RN was approved for a three-year extension if funds became available. To date, no money has been forthcoming and the group struggles to find outside funding to keep the program operating. The president’s budget for the coming year has zeroed out the program entirely.

Advocates also managed to get lymphedema research included on the list that Congress puts together for the Department of Defense peer review medical research program by showing that lymphedema disproportionately impacts people in the military, “especially by pointing out that, thanks to the burn pits in Afghanistan and Iraq, where service members were inhaling toxic fumes, they were coming down with a whole host of diseases. At the top of the list was head and neck cancer, which results in lymphedema in over 70% of patients,” Repicci said.

For two years, the research was funded, resulting in $12 million in lymphatic and lymphedema research grants. The program funding was then cut by more than half, while dozens of new diseases cut from other programs were added to the list eligible for funding. The result was twice as many diseases and half the funding, Repicci said. Neither lymphedema nor lymphatic diseases made the list for the fiscal 2025 budget, so researchers can’t even apply for the funding.

“This year when lymphatic diseases mysteriously dropped from the list it was really shocking,” Fondy said, adding it wouldn’t cost any extra to add it back on. “It’s just a matter of letting our researchers compete with other researchers.”

Other research funding has also been cut or is now very shaky, Repicci said.

Congress had asked the National Heart, Lung and Blood Institute to create the National Commission on Lymphatic Diseases to study improving the prognosis for lymphatic diseases and to learn more about them. Work began last year, but there have been no official meetings this year. Repicci thinks the panel is determined to release its report, even with no further meetings, but “I fear no matter what it says, my ability to lobby to fund any of the kinds of changes that are in there has greatly diminished,” he said, despite bipartisan support.

“The sense at this point from both sides is that an example is going to be made of Health and Human Services, and there’s nothing we can do.”

Almost anyone’s disease

While breast cancer accounts for the most cancer cases, lymphedema’s not a women’s disease. The American Cancer Society reports roughly 1 in 8 men will at some point develop prostate cancer. After treatment, lymphedema can occur in the legs, groin or scrotum. Men and children also suffer from lymphedema either through cancer or because they are born with it or for hereditary reasons. Melanoma is one reason members of the military are hit so hard by lymphedema, because they spend so much of their time unprotected outside. Melanoma rates are much higher in the military than in the broader population.

People can get lymphedema as well from a bad car accident, surgical trauma, a groin hernia surgery, said Dr. Fatma Tuncer, a lymphedema specialist and plastic surgeon at Huntsman Cancer Institute at the University of Utah. The origin of some cases remains unknown. Long-term studies suggest it can take 10 years to manifest.

“Most of the time, the issue is quality of life,” she said. “People have jobs, careers, hobbies they can’t do.”

The National Library of Medicine reports a cure is rarely achieved, but “meticulous treatment and preventive measures” can lessen symptoms, slow or stop disease progression and prevent complications. Patients with chronic lymphedema for a decade or more risk developing lymphangiosarcoma — a highly aggressive tumor that may require amputation of the involved extremity.

Treating lymphedema

Managing lymphedema can take hours daily, including donning compression garments, being vigilant about skin care, doing self-lymph draining or using a pneumatic compression device, as well as special exercises to remove fluid.

Few know that better than Fondy, who wears compression garments all the time. Lymphedema, she said, is “one of those things that profoundly affects my life.”

The Huntsman Cancer Institute is designated as a Comprehensive Cancer Center of Excellence in the Diagnosis and Treatment of Lymphatic Diseases.

“At Huntsman Cancer Institute, we offer a spectrum of surgeries, use state of the art imagery, and offer care from our certified lymphedema therapists to provide patients the best lymphedema treatment possible,” said Tuncer, who is also an assistant professor of surgery at the Spencer Fox Eccles School of Medicine.

She said most people first hear the word when it’s diagnosed. While some patients have mild cases, others may be hospitalized for infection and even end up in intensive care.

The main treatment is massaging where fluid builds up, and once the fluid goes down, compression garments to keep the fluid from building up again.

When surgery was first suggested as a possible solution, it was met with doubt. Fondy said there’s no medication to treat it. Surgery can provide relief, but surgeons are often overworked and booked seven months to a year out. A lot of the lymphedema therapists don’t even recommend surgery because there are so few plastic surgeons trained to do it.

Patients should not expect a cure from surgery, “which is not perfect,” Tuncer added. But it can help a lot.

Some of Tuncer’s older patients have arthritis and can’t put their garments on. She would also love to see lighter garments developed. And garments don’t help everyone. Head and neck cancer treatments are especially problematic because there is no way to use compression safely. Those patients have few options to manage it, she said.

Tuncer emphasized the need to avoid infection. That’s something Kirsten Fox, 62, knows about firsthand. In 2014, after being diagnosed with breast cancer, the Park City, Utah, woman had a double mastectomy. Because of the family history, the cancer, which was in both breasts, was detected fairly early, but during surgery cancer was found in multiple lymph nodes and 10 were removed on one side, the rest radiated.

She had a little lymphedema after surgery. Hers isn’t out of control like some get, but it impacted her job and thus her livelihood. Her arm was wrapped in something akin to a cast. She started seeing a lymphedema therapist for full lymph drainage. That included relatively light massages every six to eight weeks. Then she bumped her arm in July 2023. The skin didn’t break, but she developed great pain, got flushed and felt loopy.

In the emergency room, doctors said she had cellulitis, a serious infection that’s common with lymphedema. “I’ve never been so terrified,” she told Deseret News. “And I’ve been in a plane crash.”

She had to pause lymphedema massage therapy for a month to ensure the infection was all gone; she worried about pushing it around in her arm, which was very swollen and painful.

At Huntsman, a lymphovenous bypass surgery was the recommendation. A plastic surgeon takes the lymph tube and dumps it into the nearest vein, then sews it in. That helps the lymphatic fluid drain from the limb.

The surgery wasn’t covered by her insurance, a decision she said was later overturned.

Now she sees her lymphatic therapist weekly. And she also does self-massage and uses light therapy. She’s careful not to bonk her funny bone. And she wears long sleeves to mask the difference in the size of her arms.