B.C. government needs to implement a new lymphedema strategy

Opinion: Lymphedema too often goes undiagnosed until it has advanced to a stage where extensive intervention is required to reduce painful and debilitating swelling.

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I’m a breast cancer survivor. But my treatments have left me with a lingering, chronic and progressive disease called lymphedema.

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I have to wear compression garments every day, and do self-massage and exercises to maintain the lymph flow in my arm.

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Lymphedema is poorly understood by both patients and the medical community and far too often goes unrecognized and undiagnosed until it has advanced to a stage where extensive intervention is required to reduce often painful and debilitating swelling — and sometimes serious cellulitis infections of the skin.

Lymphedema is a disease that can be more easily managed if caught early. Early diagnosis and treatment can mean significantly reduced symptoms and morbidities, and especially an improved quality of life for patients. Early intervention also means significantly reduced costs of hospitalization and wound/infection care to the health-care system.

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Lymphedema can be primary (genetic) or secondary (a result of some sort of trauma or damage to the lymph system). Unfortunately, one of the most common causes of the disease is what I experienced: damage to the lymph system from breast cancer treatment, from surgical removal of lymph nodes and radiation treatment.

As the B.C. Cancer Agency and health care in B.C. continue to improve outcomes and increase survival for cancer patients, an unfortunate side-effect is an increase in the number of patients who develop lymphedema.

Other jurisdictions, including Alberta, provide more surveillance and follow-up with breast cancer patients. I had my initial diagnosis and treatment in Alberta, and there was a lymphedema clinic associated with the Tom Baker Cancer Clinic in Calgary.

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In B.C. hospitals, only Surrey Memorial has lymphedema care offered as a follow-up to breast cancer treatment, and it’s minimal. B.C. has only two specialist doctors for lymphedema, and only one clinic (surgical only); waiting times are very long to get in to see the specialist to even get a confirmed diagnosis.

Also, Pharmacare doesn’t cover costs of compression garments for low-income patients who have lymphedema unless the lymphedema is related to breast cancer. Without compression garments (and they are pricey), the disease will continue to progress in most lymphedema patients — mobility and function may be impaired while pain and risk of infection may increase.

The B.C. Lymphedema Association is marking World Lymphedema Day on March 6 with a call to action for the B.C. government to implement a new lymphedema strategy, which includes: efforts to increase awareness of the disease among medical professionals, and at-risk patients; coverage for compression garments to low-income patients diagnosed with lymphedema; and a plan to establish clinics for lymphedema care, especially post-cancer treatment, in each health region in B.C.

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Sandi McConnach is president of the B.C. Lymphedema Association.

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reference: theprovince.com

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