For more than 25 years, breast cancer survivors were given a lifelong, life-changing warning: do not lift anything over five pounds, avoid getting manicures, taking saunas or even gardening. They were told these activities might lead to a painful complication called lymphoedema, which can cause irreversible swelling in the arm and often hardening of skin.
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. Lymphoedema 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 lymphoedema.
But after looking at studies over the past decade, doctors in the US have relaxed the old warnings of lymphoedema dos and don’ts. “We continue to caution women about injury to the hand/arm that is at risk for lymphoedema,” said Katherine Kopkash, director of oncoplastic breast surgery at North Shore University Health System outside Chicago. “Meaning, when gardening, you should wear gloves. If receiving manicures, you should not have your cuticles cut. Be careful in saunas to limit your exposure to heat, and avoid burns.” Using light weights and very slowly increasing them is also OK.
Many of these warnings, said Simona Shaitelman, associate professor of radiation oncology at the University of Texas MD Anderson Cancer Centre, were little more than “old wives’ tales”, which in recent years have been debunked based on results of well-run studies.
Kathryn Schmitz, a professor of public health sciences at Penn State Cancer Institute and president of the American College of Sports Medicine, conducted those studies, which showed that a careful return to working out with weights did not increase the risk of lymphoedema.
In addition to warnings about working out and not lifting anything heavy, women were told to wear a compression sleeve when travelling by air, to prevent air pressure causing lymph flow problems, and not to have blood pressure readings or blood draws on the affected arm
Estimates of how many people get lymphoedema after cancer treatment vary widely. A 2018 study in the New England Journal of Medicine estimated between 14 per cent to 40 per cent of women post-breast cancer surgery got lymphoedema, 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 lymphoedema.)
For years, breast cancer doctors used axillary lymph node dissection (removal of lymph nodes in the underarm) to see if cancer had spread beyond the tumour, often removing between 10 and 40 of the nodes, which made the chances for lymphoedema fairly high.
In the late 1990s, sentinel node biopsy (removing only the node closest to the tumour 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 lymphoedema, it can still occur – the New England Journal of Medicine calculated the risk for women using the sentinel node technique at about 6 per cent to 10 per cent.
“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 travelling 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 treat lymphoedema early and is involved in ongoing research, cites a 2016 study by researchers at Harvard Medical School and Massachusetts General Hospital that investigated the warnings and found they were based on anecdotal evidence. “Despite the prevalence and persistence of recommendations to pursue precautionary behaviour 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 lymphoedema you should wear that.”
Precautions about manicures and avoiding heat are now also viewed as extreme.
A small 2017 study by Florida State University researchers not only found that resistance exercise training in women who have breast cancer-related lymphoedema, 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 lymphoedema”.
Schmitz said that in addition to her research that showed slow progressive weight training would not cause lymphoedema, 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 programme, where specially trained physical therapists provide rehabilitation services to breast cancer survivors to improve their fitness. The scheme, funded by the US National Cancer Institute, is being used by over 600 physical and occupational therapists worldwide, Schmitz said.
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