Cancer treatment side-effect can be managed

Medicine is doing an incredible job of helping people survive cancer and live longer. But we don’t do as well in understanding and managing the side-effects of cancer treatment, which can sometimes last a lifetime.

As an occupational therapist, I work with cancer survivors every day, treating a common but obscure condition called lymphedema. It’s commonly sparked by surgery and/or radiation involving lymph nodes. When the lymphatic system has been damaged, lymph fluid that pumps through the body collects in the tissues and starts to build up, causing chronic swelling.

Among Canadians living with cancer, 155,000 (15.5 per cent) suffer from lymphedema. Lymphedema is more prevalent with breast and cervical cancer, sarcoma and melanoma. It’s a lifelong condition, but when detected and treated early, can be managed to prevent it from getting worse.

Without careful management, a limb can swell terribly. Bringing it under control is a daily struggle involving wrapping the limb in layers of bandages, wearing a compression garment and/or specialized massage. Only through trial and error do we learn what works on each person.

The emotional effects are hard. Patients say lymphedema can be worse than cancer. It’s a life changer and a constant reminder of the cancer. It can affect a person’s body image, the clothes they wear, their ability to function, work and socialize. I often feel the heavy burden patients carry from the unending work of living with lymphedema every day.

I remind patients that while this condition may affect their quality of life, it does not define who they are — just like cancer. Some patients may be tempted to ignore this condition and hope that the swelling will just go away. Only through education and learning the skills to self-manage lymphedema do patients gain the confidence of moving forward and doing what’s important to them.

If you’ve been feeling a fullness or heaviness in the affected limb after cancer treatment, this could be the first sign of lymphedema. Some numbness, tingling, swelling and reduced movement are typical, but if it persists more than three months, these may be early signs.

The first step is to rule out other causes. Your family doctor can look into what may cause swelling. A Doppler ultrasound may be used to rule out blood clot and other tests such as X-rays, blood tests and urine analysis if necessary. If your doctor can’t find any other cause, he or she should refer you to a hospital lymphedema clinic.

In our clinic, we work with a physiatrist, who helps with diagnosis of lymphedema, and therapists who teach patients self-massage, bandaging and kinesiotaping, which helps redirect lymph flow and helps to control swelling. I teach the importance of exercise, help set them up with compression garments, teach relaxation techniques and address return to work concerns. Together, we talk about how to continue enjoying activities that may trigger swelling as well as finding ways to manage the emotional challenges. For example:

During flights, the loss of cabin pressure during takeoff and landing is tough on the lymphatic system, but this can be managed with a properly fitted compression sleeve. Make an appointment well in advance of travel with a certified fitter.

Don’t let fear keep you from doing activities that you love. Research shows that lifting weights does not make swelling worse. Listen to your body. Start slowly and build gradually, seek support with exercise if you need it.

Good news may be on the horizon: A cancer drug that has been used safely in Japan for cancer for many years is being tested now to learn whether its anti-inflammatory properties could help to manage lymphedema. But because we know that lymphedema is strongly associated with inflammation, some patients’ care plan may include anti-inflammatory supplements and eating diets rich in healthy fats, vegetables and fruit.

If you have lymphedema, or suspect you may be developing it, don’t panic. It is not a fatal condition. People live with it like they do with diabetes, asthma or hypertension. You are not alone.

Stephanie Phan is a lecturer in U of T’s Department of Occupational Science and Occupational Therapy and a Clinical Lead in the Cancer Rehabilitation and Survivorship Program at the Princess Margaret Cancer Centre. University of Toronto