Understanding Lymphedema and How to Relieve the Chronic Pain
About a year after her double mastectomy, Susan O’Brien began to notice some pain and swelling in her right arm and hand.
“My fingers turned into little bratwursts,” O’Brien said.
It was lymphedema, a chronic condition that impacts 3 to 5 million Americans. This painful and uncomfortable swelling of the arms and fingers, which can also be present in the legs and feet, occurs after a patient’s lymph nodes are removed as a necessary part of surgery. It’s most common in breast cancer patients, but occurs after other types of cancer and non-cancer surgery.
O’Brien works hard to keep her lymphedema at bay, and knows what to do when it flares up: Physical therapy sessions at the Stefanie Spielman Comprehensive Breast Center that include massages. She also wears compression sleeves and gloves.
“I’m very active and I’m not going to let my lymphedema define me or limit me,” she said.
Advances in research have reduced the number of lymph nodes that surgeons remove, which in turn reduces the occurrence of lymphedema. New microsurgery procedures can also reduce the symptoms of this chronic problem. The Ohio State University Comprehensive Cancer Center – James Cancer Hospital and Solove Research Institute (OSUCCC – James) is at the forefront of research and practice in these areas, and the Stefanie Spielman Comprehensive Breast Center has physical therapists that are specially trained in treating lymphedema, and many are certified by the Lymphology Association of North America (LANA).
“Lymphedema is the most concerning complication of a lymph node dissection,” said Doreen Agnese, MD, associate professor of surgery at the OSUCCC – James. “It’s painful and your range of motion becomes limited. If we can identify it early, it can be better treated and managed with physical therapy and massage and compression sleeves and gloves.”
Lymphatic fluid circulates through the body to remove waste, bacteria and other unwanted substances. “Edema” refers to the swelling or buildup of excessive fluids. Lymphedema occurs after several lymph nodes are removed, or in the natural absence or impairment of them. The lymphatic systems of some patients can no longer manage the fluid, which builds up and collects in the arm or other areas of the body, causing swelling and pain.
It is essential to remove lymph nodes in the armpit area during breast cancer surgery, because “they’re the road map,” Agnese said. “Cancer travels through lymphatic channels and we mimic the route of the cancer cells to find the first lymph node it would have traveled to.”
Cancer in these “sentinel” lymph nodes, which are the first lymph node or group of nodes draining a cancer, indicates whether the breast cancer has metastasized.
The location of the sentinel nodes “is different for everyone,” Agnese said, adding lymph nodes vary in size, but are small and kidney bean shaped. “And they can blend in with fat, which makes them hard to find.”
Patients are injected with a low-level, radioactive blue dye that surgeons use to find the first two or three lymph nodes on the “road map.” If cancer is not present in these sentinel nodes, there is no need to remove additional lymph nodes. And, the fewer lymph nodes that are removed, the less likely a patient is to develop lymphedema.
But cancer is tricky, and “there can be a tumor that blocks the path of the dye,” Agnese said. “Even if I don’t see any blue dye in a node, I always feel around to see if there’s something suspicious.”
Years ago, the standard treatment was to remove most of a patient’s lymph nodes during all types breast cancer surgery: mastectomies and lumpectomies. Research in the 1990s determined only the sentinel nodes had to be removed to determine if the cancer had spread.
“We used to take out between 15 and 30 lymph nodes, now we take out two or three,” Agnese said.
Further research has led to the reduction of lymph node removal in some breast cancer patients. For women whose tumor is less than 5 centimeters and will have lumpectomy surgery, followed by radiation, “even if they have cancer in one or two sentinel nodes, they don’t need a full dissection, because the research has shown that in 80 percent of these cases no other lymph nodes have cancer,” Agnese said.
Forty to 60 percent of all cancer patients who have full lymph node removal are at risk of developing lymphedema, said Roman Skoracki, MD, division chief of oncologic plastic surgery at the OSUCCC – James.
However, there are surgical options to reduce the impact of lymphedema and Skoracki is one of the leaders in this field. He performs two types of microsurgery: Lymphovenous bypass and vascularized lymph node transfer. Both involve re-routing lymphatic channels to allow for proper draining of fluids.
“After lymphedema-relieving surgery, more than 60 percent of patients will have a significant improvement in their symptoms,” Skoracki said. “Additionally, in more than 50 percent of patients we are able to measure a very significant decrease in the size of their affected limb.”
Removing fewer lymph nodes, improved physical therapy procedures and the development of microsurgery have combined to reduce the impact of lymphedema.
“Certainly in my lifetime we’ve seen the role of lymph node surgery decrease,” Agnese said.
Agnese was O’Brien’s surgeon, and both ride in Pelotonia. Agnese rides on Team Buckeye – OSU Surgical Oncology and Friends, and O’Brien rides on Team Buckeye – Advancement at OSU.
O’Brien said most of the time, she is able to keep her lymphedema under control and lead an active life. She works in the Office of Advancement at Ohio State.
“I have a flare up when I get too much sun or I exert myself too much and lift too much,” she said. “And I have to be careful when I fly, the decompression of the cabin affects it.”
She’s found that the jets in a warm-water pool are great therapy.
“I stretch down and let the jets go up and down my arm,” she said. “That helps move the fluids and it feels better.”
Stay tuned for a future blog post in which we’ll follow Susan O’Brien to a physical therapy session at the Stefanie Spielman Comprehensive Breast Center.