BALTIMORE — It can be one of the nasty surprises for breast cancer patients.
After the lump, the biopsy, the surgery, the radiation and the chemo, the wig and the mastectomy bathing suit — as if these things were not enough — suddenly one arm, or both, swells monstrously, painfully.
It is lymphedema. And nobody warned you about it.
“I never expected it. I never even heard of it,” said Tia Neale, a breast cancer patient who lives in Owings Mills, Md.
She is resting on an examining table at Mercy Medical Center’s Weinberg Center while therapist Maureen McBeth gently massages her chest, stomach, arm and hand, doing manually what Neale’s lymphatic system isn’t doing on its own anymore — urging the fluid the body makes ceaselessly into the circulatory system and out of the body.
The massage treatment takes about an hour and Neale travels to Mercy two to three times a week — she used to come daily — to control the swelling.
As soon as McBeth finishes, she helps Neale wrestle her arm and hand into a tight-fitting sleeve and glove. Called compression garments, they will continue to do what McBeth’s gentle fingertips have been doing.
Neale must wear the sleeves 24 hours a day, probably for the rest of her life. Lymphedema — the result of damage or removal of lymph glands during breast cancer treatment — can be controlled, but it can’t be cured.
“It’s not like you can put lymph nodes back,” said McBeth, who manages cancer rehab for Mercy. “For more people, this is lifelong.”
The compression garments cost anywhere from $50 to $2,000 each. The average might be about $400 a set. Most must be custom-made to fit the patient’s measurements. You need two so one can be washed, and a different, specialized garment to wear at night. You might need to replace them every six months.
And here is the other nasty surprise: Medicare doesn’t pay for these compression garments and, because Medicare sets the coverage standard, almost no private insurers pay for them either. Or they pay very little.
“It is adding insult to injury,” said McBeth, who massages more than her patients’ hands and arms. She works whatever angles she can to find private money to help her patients pay for these garments. “Every soccer-playing kid in America has a pair of spandex shorts, and my patients can’t get the garments they need,” she said.
Lymphedema is not just another embarrassing disfigurement caused by breast cancer. And discomfort and limited range of motion are not the only side effects.
The protein-rich fluid that collects under the skin is the perfect breeding ground for cellulitis, an aggressive infection that can be provoked by something as simple as a paper cut and can require weeks of hospitalization and heavy-duty antibiotics.
Neale, who could not lift her arm above her head, now has full range of motion.
“I know I can help every patient I see,” said McBeth, who lectures nationally on treating lymphedema. “But I don’t have the resources and my patients don’t have the money. I shouldn’t have to say that I wish I’d win the lottery to take care of them.”