LEWISBURG — At the American Society of Breast Cancer Surgeons last year, actress Kathy Bates shared her story of surviving breast cancer surgery in 2012 only to develop lymphedema, a condition that causes swelling in the arms after breast surgery.

“When I get on a plane, I have to wear my compression sleeves,” she said. “I can’t lift heavy things, I can’t go into hot water because putting heat on it makes it swell, but cold isn’t good because it constricts everything.”

“Lymphedema penetrates every part of life. It’s a miserable, miserable condition,” said John F. Turner, MD, FACS, Medical Director of the Thyra M. Humphreys Center for Breast Health at Evangelical Community Hospital. “To me, after local recurrence or metastatic disease, it is the third worst problem that occurs after breast cancer treatment.”

It’s also been one of the most neglected areas of breast cancer care.

“The doctor told Kathy Bates, ‘Just be glad you’re alive,’” Turner said, anger showing in his expression.

That’s not how Turner responds to his patients.

Lymphedema can occur any time a lymph node is damaged, whether through surgical removal or even a biopsy. The 600 to 650 lymph nodes in the body remove impurities like bacteria and viruses in our systems. 

Cancer cells also get caught up in the lymph nodes and can spread throughout the body, so until about 13 years ago, the medical community urged removing lymph nodes of breast cancer patients.

However, about 30 percent of those patients developed lymphedema. More recent studies have looked at sentinel nodes, a group that tends to become cancerous before the other nodes. If the sentinel nodes are negative, you can presume the rest are negative, as well. Further, by treating the cancer systemically, with chemotherapy or hormone therapy, the cancer can be killed throughout the body, including the lymph nodes.

Avoiding damage to lymph nodes almost diminishes the risk of lymphedema, but today, patients have powerful tools to fight even a slim chance of lymphedema.

“One of the biggest things we have done in the area of lymphedema prevention is prehab,” Turner said.

The opposite of rehab, which occurs after an injury or surgery, prehab watches for a problem and treats it as early as possible.

“In the 1980s, lymphedema patients sometimes developed massive arms,” said Clint Stetler, physical therapist and certified lymphedema therapist (CLT) at Physical Therapy of Evangelical. “We don’t see that at all anymore.”

An important part of prehab is finding fluid build-up in the arm before swelling occurs. For that, nothing beats an L-Dex machine, which looks a bit like a treadmill. A patient stands barefoot on the L-Dex and grasps two handles while a very low current of electricity passes through the tissues in the body. The amount of fluid in the left and right side is compared to see if swelling is beginning.

“It really doesn’t get any more simple,” Turner said. “There’s no pain involved. No needle stick. You just stand there.”

“That test can actually detect lymphedema before it can be visually observed or measured with a tape measure,” Stetler said. “With the L-Dex we’re catching lymphoma sooner so that it is almost reversible with treatment.”

Treatment includes specific massage to manually drain the lymphatic pathways; compression sleeve; compression wrap/bandage; sequential compression pump; exercise and skin care to prevent infection.

“The vast, vast majority of patients have returned to normal, and they don’t have to wear the sleeve anymore,” Turner said.

Skin care is key to preventing lymphedema because any cut or damage to the skin can cause infection and affect lymph nodes.

“Avoid bad sunburn. Be cautions of bug bites and cuts on the skin. Anything that jacks up the lymphatic system,” Stetler said.

Wearing gloves when doing things like gardening is recommended.

“You can’t eliminate the risk of hurting your hand, but you’re going to markedly lower the risk,” Turner said. And though it’s hard to quantitate the number of lymphedemas avoided because of the L-Dex and education, he added, “I do know the incidence of lymphedema is palpably lower in my practice than it used to be.”

Stetler agreed, saying if patients are consistent with L-Dex scans and wrapping their arm if early swelling is detected, it shouldn’t progress to lymphedema.

“And if it does,” he said, “we will treat it and control it.”

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