Healthy Living

Lymphedema: Myths and Facts for Breast Cancer Survivors

Oct. 17, 2014
Lymphedema can be a long-term complication of cancer treatment, and it often affects individuals who have had surgery for breast cancer.
breast cancer survivor
Lymphedema is an abnormal collection of high-protein fluid beneath the skin caused by damage to the lymphatic system. With breast cancer surgery, that damage is caused by the removal of lymph nodes that have been affected by the cancer. Radiation therapy can also contribute to the risk of lymphedema.
Lymphedema causes swelling of the surrounding tissues. For those who have had breast cancer surgery, it can affect the arm, breast, back, and trunk.
Occupational therapist Jayne Knowlton clears up some misinformation on this condition.
Myth: Nothing can be done for lymphedema.
While lymphedema is not curable, it can be treated and managed. The goals for treating lymphedema are to control the swelling, decrease any pain, improve the ability to move the affected limb, and allow a person to continue with regular daily activities.
Specially trained and certified therapists can provide Complete Decongestive Therapy, or CDT, which combines manual lymph drainage techniques, compression, meticulous skin and nail care, and exercise to reroute lymphatic fluid. The sooner the treatment begins, the better the outcomes tend to be.
New techniques are always being discovered and tested so even if you were treated in the past, a new consult may be beneficial if your symptoms are currently not under control. 
Myth: I can’t lift anything or be active anymore.
Lifting and physical activity are fine as long as you’re not overexerting the affected arm and your symptoms do not increase. In fact, inactivity and a sedentary lifestyle are risk factors for lymphedema. Because the lymphatic system requires muscle pumping to operate well, exercise helps keep the system strong. In addition, physical activity helps you maintain a healthy weight, which can reduce your risk for lymphedema. 
Consult your provider or lymphedema therapist before starting any exercise program if you are at risk for or have lymphedema.
Myth: I didn’t develop lymphedema right after my surgery, so it’s not going to be a problem.
While lymphedema can occur in the days following treatment, it can also develop months or years later. Unfortunately, there are no tests to determine who will develop it, and your risk for lymphedema can increase with age. Obesity is a risk factor as well.
Lymphedema can be triggered by injuries — even small pinpricks—in the affected quadrant of the body. So it’s essential that anyone at risk for lymphedema be cautious and take good care of their skin to prevent injury and infection.
Research is inconclusive about whether extreme heat or a change in air pressure can exacerbate lymphedema. However, my experience leads me to suggest that patients limit exposure to extreme heat such as found in hot tubs, saunas and heat waves. Additionally, I recommend patients wear a compression garment during car or air travel.
If you have concerns about situations that may increase your risk for lymphedema, talk to your lymphedema therapist.
Myth: I’m not at risk because I only had one or two lymph nodes removed.
Lymphedema affects every person differently. While it’s true that individuals who have five or more lymph nodes removed are at higher risk, those who have had fewer removed can still develop lymphedema. Radiation treatments after surgery can exacerbate a person’s risk for lymphedema regardless of the number of lymph nodes removed.
Understanding lymphedema is an important part of reducing your risk for this long-term complication of breast cancer treatment. 
If you have concerns about your potential for developing lymphedema, talk to your care team and request a referral to an experienced lymphedema specialist.
Jayne Knowlton, M.S., O.T.L., has extensive experience working with patients who have lymphedema. She works from UR Medicine’s Clinton Crossings facility.