First, there was achiness, a pain that never went away. Then, her right arm and hand began to swell, a little at first and then a lot. Then Rebecca Thomas, a breast cancer survivor five years out from surgery, chemo and radiation, was hospitalized with a raging infection.

“The swelling wasn’t bad at first and I didn’t think much of it,” said the 65-year-old food service worker from Seattle, who was diagnosed with cancer in 1988. “But I got a [cut] on my finger and bacteria got in there and I ended up with a very bad case of cellulitis. It got at least three times the normal size, my whole hand and arm. After that is when the trouble really set in.”

Thomas’ “trouble” was lymphedema, a condition that impacts millions of U.S. cancer survivors every year, particularly patients who undergo lymph node dissection as part of their treatment, like actress and “lymphedema ambassador” Kathy Bates.

The National Cancer Institute calls lymphedema “one of the most poorly understood, relatively underestimated, and least researched complications of cancer or its treatment.” Others refer to it as cancer’s “dirty little secret” since patients often don’t know they’re at risk for it, general practitioners may not know how to diagnose or treat it and the condition can be so fickle that even cancer care providers can’t predict who will get it or when. Pain, swelling and related infections can happen months, years or even decades after surgery and treatment.

And while early treatment with compression garments can vastly improve patients’ quality of life by keeping the swelling in check, Medicare and other insurers often don’t cover them, forcing many to live with a painful, debilitating, embarrassing and costly condition – sometimes for years.

How cancer treatment impacts lymph nodes

Lymphedema is tied to the body’s cell waste disposal system, which acts a bit like a garbage pickup service. Cells create waste (bacteria and proteins) that are picked up and shuttled along by the lymphatic system and then processed by the lymph nodes, which act as the garbage and recycling plants in the bustling city that is your body.

Unfortunately, when these lymph nodes (or processing plants) are blocked or damaged or removed thanks to a tumor, surgery or radiation, our cell’s “garbage” starts to pile up and the limbs begin to swell. If left untreated, lymphedema can trigger a chain reaction of complications, most notably sudden, serious and recurrent infections brought on by unchecked bacteria that thrive in the trapped lymph fluid.

“Any patient who has a tumor or surgery that disrupts the lymphatics under the arm or adjacent to the neck or in the groin may end up with edema of the extremities,” said Dr. Gary Lyman, researcher and breast cancer oncologist with Fred Hutchinson Cancer Research Center and its treatment arm, Seattle Cancer Care Alliance.

“It can be relatively mild to quite severe,” he said. “It’s unsightly, puts patients at increased risk of recurrent infections and pain and quality of life can be dramatically affected.  Most breast cancer patients today don’t develop severe lymphedema but it still occurs and when it does, it’s a major life event and a lifelong event.”

Fortunately, lymphedema isn’t all that hard to manage if caught early.

Experts say those at risk should first and foremost protect their skin from cuts and scratches, i.e., don’t go blackberry picking without long sleeves, use bug spray so you don’t get insect bites and don’t try to pet the cranky neighborhood cat. If it’s really hot out and you’re having a “flare” – your arm starts to feel hot and tight and somehow bigger – avoid anything that would aggravate it further like strenuous gardening or pushups.

In other words, listen to your body and learn the subtle symptoms so you can nip the condition in the bud. If you notice any signs of swelling, contact a lymphedema therapist.

Subtle symptoms

Lymphedema usually starts with an arm or leg simply feeling “heavy” or “tight.” As it progresses, the arm or leg (or hand/foot) will slowly swell, rings or watches may suddenly seem too small and shoes may not fit. The limb may also ache, become less flexible or even itch. Without treatment, the swelling will become more pronounced and the chance of infection from even a small cut or scrape will skyrocket.

Red, blotchy skin; pain in the lymphedema limb, and fever and chills are all signs of infection. And bacteria can enter the bloodstream from anywhere in the body and travel to the lymphedema area, say experts.

“We had a patient who was getting infections every three months and we discovered she was getting dental work done and bacteria were being introduced through her gum line,” said Sue Frohreich, a physical therapist with SCCA. “She started doing a preventive prophylactic antibiotic the morning of her dental appointments and never had an infection again to my knowledge.”

Anywhere from 6 to 63 percent of breast cancer patients develop lymphedema (depending on the study you read), most as a result of radiation and/or the surgical removal of lymph nodes (obesity exacerbates the condition possibly due to excess inflammation). A joint Fred Hutch/NCI study that followed breast cancer patients for 10 years found 29 percent went on to develop lymphedema anywhere from two weeks to 11 years post diagnosis.

As for other cancers, a 2010 meta-analysis found that the overall incidence of lymphedema was 30 percent in sarcomas; 20 percent in gynecologic cancers; 16 percent in melanomas; 10 percent in genitourinary cancers and 4 percent in head/neck cancers.

“Anyone who has had lymph nodes removed or radiated should be seen by a lymphedema therapist even if they don’t have swelling to get educated about the signs and symptoms and the things they can do to reduce the risk of getting it,” said physical therapist Carol Baltaxe, also with SCCA.

Treatment options include lymphatic drainage massage, compression and, more recently, surgery. Exercise – done correctly (patients should discuss this with a physical therapist or other lymphedema expert) – is another effective way to manage symptoms.

“Being active can actually help stimulate the lymphatic system,” said Frohreich. “As long as they do slow progression, it doesn’t increase their incidence of lymphedema.”

Rude stares and repeated infections

Seattle cancer survivor Cindy Alsobrook, 42, developed lymphedema in her left leg shortly after she finished surgery, chemo and radiation for cervical cancer in December 2013.

“I had surgery to remove my ovaries and Fallopian tubes and they took 32 lymph nodes because they were looking cancery,” she said. “So my lymph system had quite a few nodes removed and then the radiation went in and fried what I had left. “

As a result Alsobrook’s left leg has doubled and even tripled in size and she’s suffered repeated cellulitis infections and one hospitalization.

And those are only the physical symptoms. The condition also carries a heavy psychological burden.

A former preschool teacher who’d just launched a new career in retail, Alsobrook was forced to give up her job. She routinely deals with stares and rude comments from strangers. Thanks to lymphedema, she can’t exercise, wear her favorite clothes or even go for a walk without feeling its effects.

“I spend a lot of time lying on the couch watching movies or reading now,” she said. “I used to go roller skating. I used to walk three to five miles a day. Now, walking four to five blocks to the grocery store is about all I can do. And I’m much slower than I used to be. I’m getting lapped by grandmas with their walkers. I miss skinny jeans and cute shoes something terrible. Even things like yoga pants can be difficult. To get the big leg to fit, the skinny leg is swimming.”

Delayed diagnosis

While Alsobrook was warned about lymphedema both before and after surgery and radiation, experts say this isn’t always the case.

“There are definitely information gaps out there in the medical community,” said Sam Roth, patient and outreach coordinator with the National Lymphedema Network, based in San Francisco. “People come out of cancer therapy or surgery with very moderate lymphedema and if they’re not educated on basic risk reduction and practices, they can exacerbate it.”

Those at risk, for instance, may want to avoid the heat, wear a compression sleeve when flying and avoid putting extra weight, strain or constriction on their affected limbs, he said. (For more tips, click here.)

Cancer patients should also be aware that lymphedema is commonly misdiagnosed by general practitioners.

“I remember one patient who kept hearing the diagnosis that she was retaining water,” said Roth. “This happens to a lot of patients. Unfortunately, she was misdiagnosed for years. She was in tears when she finally talked to us. The swelling in her legs had gotten so bad that part of her skin was hanging down like an extra appendage.”

The earlier you catch it, the more manageable it is, Roth stressed, “but just getting a diagnosis and getting recognition of it is difficult.”

A new process at SCCA should make diagnosis easier.

“We’re going to start doing pre-surgical baseline arm measurements in breast cancer patients so we’ll know when we start to see signs of swelling earlier,” said Baltaxe.

Lymphedema and the law

But even if lymphedema is diagnosed early, treatment may not be covered by insurance.

Both Thomas and Alsobrook went without custom compression garments for years (and in Thomas’ case, decades) because they couldn’t afford the out-of-pocket costs. Thomas’ one custom-made sleeve and glove cost $1,000 (she wore it out years ago and never replaced it) and the single custom leg compression garment Alsobrook saved for months to buy ran $1,700 (most patients require a pair of compression garments every six months for each affected limb).

Without compression, the lymphedema flourished.

“I feel like the insurance could have saved a lot of trouble and money if they would have just given me custom compression garment from the beginning,” said Alsobrook, who is on Medicaid. “I feel like I would have been able to return to work if it hadn’t gotten to the stage it is now. I’ve got permanent tissue damage going on now and I can only get it to go down so far.”

Baltaxe, who often chases down resources for patients like Alsobrook, said the current lack of coverage for compression garments “doesn’t make any financial sense,” pointing to a 2009 study that showed women with breast cancer-related lymphedema (BCRL) incurred an average of $7,000 more in health care costs per year than those without BCRL.

“[Compression] is a minimal cost for an insurance company,” she said. “And it’s a lot cheaper to have a patient in a compression garment than to pay for the cost of IV antibiotics or hospitalization.”

A bill known as the Lymphedema Treatment Act, sponsored by Washington State Rep. Dave Reichert may help change that. The bill, a patient-driven grassroots effort, is under consideration by two House committees.  Its aim, according to the LTA website, is to “improve coverage for the treatment of lymphedema from any cause by amending Medicare statute to allow for coverage of compression supplies.” Changing the Medicare law could set a precedent for Medicaid and private insurers to follow..

Lyman, co-director of Fred Hutch’s HICOR group, which helps to identify the best value in cancer care, said the proposed change in law is a “no-brainer.”

“There is absolutely no reason why the Centers for Medicare & Medicaid Services should not reimburse the cost of a sleeve for any patient with lymphedema,” he said. “It’s controlling the symptoms, it’s non-toxic and it’s not expensive.  I don’t understand any rationale for not reimbursing for compression. It only takes a few patients with a $100,000 hospital bill to more than offset what they view as cost savings by not preventing infections with a compression sleeve.”

Thomas, who knows others who’ve been diagnosed with breast cancer and lymphedema, said compression makes all the difference.

“It would have been a different story if I had not gotten the cellulitis,” she said. “[A family member] has breast cancer and she got a sleeve recently. I can hardly see the swelling, but I know they can tell when there’s lymphedema there. I’m really grateful she got it taken care of so soon. It’s not going to be as bad an issue for her.”