One of the greatest frustrations breast cancer patients have about treatment is getting the right information through every step of the process—and this includes after treatment ends. One area where myths and misinformation dwell is the subject of lymphedema. What is it? Who gets it? What can be done about it? And, is there a cure?
In our culture of mass media, you would think there would be ample information about this condition. But treatment for lymphedema only reached the U.S. fairly recently, within the last decade, after it was developed in Europe.
Common myths include:
- You can’t get it if you’re young.
- If you don’t develop the condition immediately after surgery, then it will never be a problem.
- Lymphedema will eventually go away on its own without treatment.
My main source of information—and misinformation--came from hearsay from others and whatever I could find on the Internet. Even healthcare professionals were not forthcoming about the risks and precautions. I was told I was “low risk” because I was young and in good shape from exercising regularly. I was advised to do whatever I could to prevent infection in my right arm (where I had 37 lymph nodes removed) by wearing gloves during yard work, and avoiding blood pressure screening and shots or blood work in that arm.
So, I go tra-la-la-ing into the future, unknowingly engaging in every behavior that put me at risk for developing lymphedema. One day after many hours of pulling weeds—with gloves—I notice my lower arm and hand were swollen, resembling a Cabbage Patch doll, a telltale sign of lympedema’s arrival.
To save you the frustration of separating fact from fiction, I talked with Carol Crochet, a physical therapist specializing in treating lymphedema at the Rehab Results Group at DeKalb Medical Center in Atlanta, GA. DeKalb was the second center in metro Atlanta to offer a treatment program in 1997.
The good news, she told me, is lymphedema can be treated. The bad news is there is no cure. Once you have this condition, it never goes away entirely. But, the sooner you seek treatment, the greater your chances are for getting--and keeping--it under control for the rest of your life.
What is it?
Lymphedema is any accumulation of fluid in the arm where you have undergone surgery and/or radiation therapy for breast cancer. Whether it’s a mild case or your arm is extremely enlarged, if there's swelling, you have lymphedema.
"This abnormal accumulation of high protein fluid is caused by the malfunctioning of lymphatic system, which can no longer effectively move lymph fluid throughout your body," Crochet explains.
Who gets it?
"Approximately 30% of breast cancer patients develop lymphedema," Crochet says. But, there are no known indicators at this point as to who develops it. You can have lymphedema, even if you
- only had a few lymph nodes removed,
- are young,
- are not overweight and exercise regularly,
- didn’t develop it right after surgery - it can occur any time over your lifetime.
What causes it?
Any stress can bring on lymphedema, such as
- Infection - due to burns, insect bites, cuts or injury,
- Heavy lifting,
- Temperature extremes (hot or cold),
- Drop in air pressure (such as during flights),
- Straining your arm due to carrying heavy shoulder bags or luggage, and overusing your arm during repetitive physical activity.
How can you reduce your risk?
Take care of your treated arm, Crochet emphasizes. This covers everything from avoiding needles in your "vulnerable" arm to not carrying a heavy purse over your shoulder. But, it also includes lesser-known behaviors – like, burning your arm when reaching into the oven, or experiencing hot temperatures from a sauna or whirlpool.
The key is proper skin care— since it's your protective layer—to prevent any opening, where bacteria can enter and cause infection through cuts, scrapes and burns. This means keeping your skin clean and moisturized daily.
Additional ways to keep lymphedema infection away include
- wearing gloves during housework and yard work,
- not cutting your cuticles,
- using insect repellent to prevent bites,
- using an electric razor for shaving under your arms and wearing antiperspirants without aluminum.
Also, avoid stress on your "vulnerable" arm, which means taking frequent breaks when you're involved in intense, physical activity.
However, if the inevitable happens, and swelling occurs, seek treatment quickly with an occupational therapist (OT) or physical therapist (PT) who specializes in lymphedema.
How is it treated?
Treatment involves an evaluation, patient education and therapy.
"Patient compliance is critical for achieving optimal results with lymphedema treatment," says Crochet. " Patients must come in for treatment every day for two to four weeks--or longer--and treatment takes approximately one and a half hours. Then, patients must wear the compression bandages when not at the clinic.”
Treatment programs can take the form of complex lymphatic therapy (CLT), which is the Australian version, or complete decongestive therapy (CDT), which is the European protocol. Both programs consist of bandaging, exercise, manual lymphatic drainage (massage), skincare precautions, and instruction in a home program.
Once the swelling is reduced and you plateau, you’re ready for the maintenance phase. Managing your condition involves performing the exercises and self-massage at home, and wearing a compression sleeve.
"It’s recommended that you wear the compression sleeve all day, every day as part of your normal routine," says Crochet. "There are also nighttime garments, if lymphedema is harder to control. Women without lymphedema but who are at risk for developing it should also wear a compression sleeve when conducting any physical activity to prevent swelling, as well as during flights, since the drop in air pressure in the cabin can trigger swelling."
Also, note that the material the compression sleeves are made of are only guaranteed to be effective for six months and must be washed daily, so it’s suggested that patients buy two and alternate wearing them. (Note: Medicare and Medicaid don’t cover the cost of sleeves and only a limited number of private insurers do.)
Women suffering from lymphedema should also eat a healthy diet, manage their weight, and engage in regular cardio exercise, such as walking and swimming.
“Exercise causes your respiration rate to increase, so you breathe more deeply, and this stimulates your lymphatic system to move lymph fluid throughout your body,” Crochet explains.
With all the time and effort involved, treatment appears to be a daunting task. But, Crochet warns, over time, lymphedema that is not controlled through treatment can worsen—setting off more discomfort, disfigurement and pain—and become even more fibrotic, causing the tissue to feel harder. And, at least that is enough incentive for me to comply.