The condition is usually caused by the removal of lymph nodes, which is done during breast cancer surgery to determine if the cancer has spread. The nodes are part of the body’s lymphatic system, which protects against invaders. Lymphedema happens when a blockage, often because of scarring from surgery or radiation, causes fluid to accumulate, painfully and often irreversibly.
Doctors treating breast cancer patients long thought that infection or injury would cause inflammation, which in turn would overload the lymphatic system causing the swelling and pain of lymphedema.
But based on studies over the past decade, the old warnings of lymphedema do’s and don’ts have been dramatically relaxed.
Many of these warnings, said Simona Shaitelman, associate professor of radiation oncology at the University of Texas MD Anderson Cancer Center, were little more than “old wives’ tales,” which in recent years have been debunked based on results of a group of well-run studies.
Estimates of how many people post-cancer treatment get lymphedema vary widely. A 2018 study in the New England Journal of Medicine estimated between 14 to 40 percent of women post-breast cancer surgery got lymphedema, with newer surgical methods and treatments helping to reduce the numbers. (Treatment for other kinds of cancers, including prostate, ovarian and melanoma, can also cause lymphedema.)
For years, breast cancer doctors used axillary lymph node dissection (removal of lymph nodes in the underarm) to see if cancer has spread beyond the tumor, often removing between 10 and 40 of the nodes, which made the changes for lymphedema fairly high.
In the late 1990s, sentinel node biopsy (removing only the node closest to the tumor, to start with to see if the cancer had spread, and then looking at others only if necessary) came into use to allow fewer lymph nodes to be surgically removed. Although this decreases the chance of developing lymphedema, it can still occur — the New England Journal of Medicine calculated the risk for women using the sentinel node technique at about 6 to 10 percent.
“It depends on how many nodes were removed,” Schmitz said. “Patients need to know how many — I have seen women [with sentinel node biopsy] with 12 nodes removed.”
In addition to warnings about working out and not lifting anything heavy, women were told to wear a compression sleeve when traveling by air, to prevent air pressure causing lymph flow problems, and not to have blood pressure readings or blood draws on the affected arm.
Shaitelman, who oversees a lymph screening initiative that helps patients treat lymphedema early and is involved in ongoing research, cites a 2016 study by researchers at Harvard Medical School and Massachusetts General Hospital that investigated these warnings and found they were based on anecdotal evidence. “Despite the prevalence and persistence of recommendations to pursue precautionary behavior after breast cancer treatment, few data exist to support these practices,” the study said.
“Five years ago, we stopped giving a prophylactic sleeve” for air travel, Shaitelman said. “There is no data to say that even with mild lymphedema you should wear that.”
Precautions about manicures and avoiding heat are now also viewed with more nuance.
A small 2017 study by Florida State University researchers not only found that resistance exercise training in women who have breast cancer-related lymphedema, or are at risk for it, wasn’t harmful but reported it may in fact be “beneficial to decrease the signs/symptoms and development of lymphedema.”
Schmitz said that in addition to her research that showed slow progressive weight training would not cause lymphedema, there are other important benefits of exercise for women who have had breast cancer surgery. Many women lose fitness and cardiovascular function after breast cancer treatment having had chemotherapy and radiation. She often hears breast cancer survivors say they feel liked they “aged a decade in that year of treatment.”
“Exercise improves fatigue, anxiety, depression, sleep, bone health, physical function, cardiovascular health and improves body composition,” Schmitz said.
She and her research team developed the Strength After Breast Cancer program, where specially trained physical therapists provide rehabilitation services to breast cancer survivors to improve their fitness. The program, funded by National Cancer Institute, has partnered with Klose Training, which provides online training for physical therapists and is being utilized by over 600 physical and occupational therapists worldwide, Schmitz said.
Katherine Kopkash, director of oncoplastic breast surgery at NorthShore University HealthSystem outside Chicago, agrees with the modern approaches, keeping safety in mind.
“Meaning, when gardening, you should wear gloves,” she said. “If receiving manicures, you should not have your cuticles cut. Be careful in saunas to limit your exposure to heat and avoid burns.”