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.

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.”