Pauktuutit publishes guide to support Inuit through cancer

Sophie Keelan is a breast cancer survivor from Kangiqsualujjuaq. She talks about her challenges navigating the health care system in Pauktuutit’s new cancer care resource for Inuit, called Inuusinni Aqqusaaqtara, or My Journey. (IMAGE COURTESY OF PAUKTUUTIT)

It’s been 10 years, but Sophie Keelan can clearly remember the moment she was diagnosed with cancer.

That was in 2007. The now-retired interpreter and community health worker from Kangiqsualujjuaq was in a Montreal hospital when the doctor told her she had breast cancer.

“When the doctor gave me the news, I was completely lost,” recalled Keelan, who was alone at the time. “I was far from home and family—it was like I was walking in the clouds.”

Over the next few days and weeks, Keelan said she remained in disbelief, while she processed the diagnosis and how to move forward.

Keelan then spent the next several months travelling between Nunavik and Montreal for chemotherapy and later, for radiation, including six-week periods away from home.

“It was a rough time,” she said. “I was very weak and not fit for travelling.”

Keelan is now in remission, and shares her story to help other Inuit navigate their own health crises.

Looking back, Keelan recognizes that she faced fewer challenges than some of her fellow Inuit who have been diagnosed with cancer.

Keelan’s decades of work as a medical interpreter made it easier to discuss her options with doctors and read information on her cancer and treatments, largely available in English.

“So many people have language barriers because their first language is Inuktitut,” Keelan said.

That’s why Keelan sits on an advisory board to Pauktuutit Inuit Women of Canada’s cancer care project, which aims to boost cancer literacy and prevention among Inuit across the Inuit Nunangat.

The organization has just released its latest installment, called Inuusinni Aqqusaaqtara, or My Journey, an Inuktuk-language cancer care guide available in North Baffin, Nunavik and Inuinnaqtun dialects.

The booklet offers a step-by-step guide for Inuit who have been recently diagnosed with cancer, to help them communicate with health care professionals and make decisions about their care.

The long-term goal is to increase awareness and understanding of cancer among Inuit and improve health outcomes, said Chaneesa Ryan, a health policy and programs coordinator at Pauktuutit.

Inuusinni Aqqusaaqtara also includes an online video resource, including interviews with Inuit cancer survivors, like Keelan, their families and doctors.

Inuit in Canada have higher rates of cancer incidence and death than the rest of the population.

Inuit suffer from the highest rate of lung cancer in the world, while new research has noted major growth in breast and colorectal cancers across the North.

And Inuit face more barriers to accessing care, with fewer screening and treatment programs are available across the North’s small and remote communities.

Pauktuutit first partnered with the Canadian Cancer Society to develop Inuktitut-language and cultural appropriate resources for Inuit in 2012, with the support of a federal grant.

In 2014, the organization published Kaggutiq, a glossary including 252 new Inuit-language terms to describe all aspects of cancer, from diagnosis to treatment.

The glossary covers dozens of basic terms for symptoms and side effects terms that have become more prominent in cancer research and care in recent years, like the human papillomavirus, or the more technical names for treatments, like magnetic resonance imaging or radiation therapy.

At a recent health conference, Ryan said she spoke with a surgeon from Iqaluit who told her she keeps a copy of our glossary in her operating room so she can communicate with Inuit patients before their surgeries.

Inuusinni Aqqusaaqtara takes that a step farther, by walking Inuit through the process: from treatment options; Inuit resources in urban centres; information on medication; lifestyle choices and how to navigate life after cancer.

Those resources have been distributed to health centres in all 53 communities across the Inuit Nunangat, Ryan said. Next, Pauktuutit plans to visit each region to promote the new material in person.

But there’s still more work to do.

“While we believe our cancer project has had a really positive impact, we know that there remains a large gap in health literacy that needs to be filled,” she said.

Keelan’s advice to anyone who’s being treated for cancer or who wants to prevent it in the first place: eat nutritious foods and follow medication regimes prescribed by your doctor.

As a breast cancer survivor, Keelan also recommends all Inuit women over 50 should have regular mammograms.

That kind of testing has become more accessible in the North, she said—at least in Nunavik, where women can schedule mammograms at health centres in both Kuujjuaq and Puvirnituq.

Wellness workers now do more outreach and cancer prevention work in the smaller communities in the region, Keelan said.

“In the past, we had nothing,” she said. “Cancer care is more advanced now.”