‘Zero support’: N.S. woman recounts the challenges of navigating a lymphoedema diagnosis

Breast cancer survivors raise awareness about lymphoedema – a painful condition that can develop after cancer treatment.

Lymphoedema is a painful disease that affects more than one million Canadians.

Erica Fleck, the former emergency management director for Halifax Regional Municipality, is one of those Canadians. She was diagnosed nearly 10 years ago after she beat breast cancer.

“I had more surgical intervention on my right side, so that is quite common. I had lymph nodes taken out on both sides, which is very common for women with breast cancer,” she said. “I started to get swelling in my legs, but my right arm is the one that still it gets painful very quickly if I don’t get treated.”

Lymphoedema is swelling that happens when lymph fluid builds up in the soft tissues of an arm or leg.

“I had to pay out of pocket for a very long time until I could get insurance to cover it. So, I was really lucky, but there are a lot of people, especially women, who can’t afford it. Compression garments are not covered. Treatment is not covered here,” said Fleck.

Studies have shown that one in four breast cancer survivors are at risk of developing lymphoedema due to the removal of lymph nodes.

It was a frustrating reality for Fleck because she said it was tough to find information to even get a diagnosis.

“I will say through cancer, there’s so much support here. The medical system was absolutely amazing,” she said. “But when I got to the lymphoedema part and trying to figure out what was going on, there was zero help, zero diagnosis, zero support.”

There is no cure for the disease, but there are ways to manage it.

“Manual lymphatic drainage is something that decreases pain, moves the fluid that might be building up in their limbs and just assists them in having a better quality of life, more comfort, less pain, and easier ability to move,” said manual lymphatic drainage therapist Lynn Gray.

Gray has been working in this field for 30 years and has helped countless patients treat their condition.

“Sometimes it can get out of control to the point that they don’t leave their home. The limb is too heavy to move. They can’t work anymore. Their self-esteem goes down. They’re stigmatized because of the appearance of what their multiple limbs might look like,” she said.

Gray and Fleck are now working together to bring standardized care to Nova Scotia.

“In order to get coverage for patients for either the compression garments that they need or the type of care that private practitioners such as myself provide, it’s necessary to have a lymphatic centre of excellence in order to validate the research that is needed to make lawmakers and legislators realize the importance of dealing with this now,” said Gray.

Fleck noted there is a fairly new centre now open in Montreal – the first of its kind in Canada.

“It only makes sense that we should have one here in Halifax,” said Fleck.

March 6 is World Lymphoedema Day, and for the first time ever, a flag was raised at Halifax City Hall to mark the occasion.

It was a step toward bringing more attention to the disease.

“There’s so much more that we can do to open people’s eyes and just make them aware,” said Fleck.

To manage her lymphoedema, Fleck continues to get monthly treatments. She has advice for anyone in the early stages of navigating their diagnosis.

“Don’t be afraid to ask for help.”

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