'When you don't know your family's medical history, that's something you think about

Madeleine Redfern and her sister, Ooleepeeka Shoo, just want to know what type of cancer killed their mother.

But their repeated requests for information on Nee Sopeolee Alexander have been stonewalled by the health records department at the Qikiqtani General Hospital.

Their multiple phone messages and faxes have not even received responses – for six years now in Shoo's case, and for nearly two years in Redfern's.

I know my mother died of cancer about 19 years ago, Redfern says. "But I don't know if it was cervical or ovarian."

It's important to know, she explains, because if a close relative had ovarian cancer, you can inherit a genetic predisposition to develop it yourself.

The doctors of both sisters have asked them to find out what caused their mother's death. If it was ovarian cancer, then additional tests and closer monitoring for Shoo and Redfern would be authorized.

As Redfern recently noted in a letter to Tagak Curley, Nunavut's minister of Health and Social Services, either of the sister's lives could be on the line.

A spokesperson for the Canadian Cancer Society told Nunatsiaq News that Canadian women have a one-in-71 lifetime probability of developing ovarian cancer.

But "if a first-degree relative (a mother, sister or daughter) had the disease, it does increase the risk, and a doctor should know that history and would take a more aggressive approach in monitoring it."

She said the society estimates 2,500 new cases will be diagnosed in 2009, and 1,750 women will die from the disease. The five-year survival rate for all women diagnosed with epithelial ovarian cancer is 40 per cent, but "the earlier the cancer is diagnosed and treated, the better the outcome."

Originally, Redfern admits, she had not worried because she did not understand about the possible hereditary factor.

"My mother abused drugs, solvents. She was a smoker and a drinker," Redfern says. "That is not my lifestyle, so I didn't think I was at risk for cancer."

Neither Redfern nor her sister grew up with their mother.

The issue is becoming more pressing for her now, Redfern says, as she approaches 45, her mother's age when she died.

It was already pressing for Shoo, the younger of the two sisters. Medical authorities found and removed a cyst from her ovaries six years ago. Her doctor said it would have become cancerous if not removed, and asked her to find out if her mother had ovarian cancer.

So the two sisters, acting independently and four years apart, did what they were told to do. Each called the Baffin Regional Hospital (now Qikiqtani General) in Iqaluit.

Redfern was given another name and phone number to call at the hospital. She called and was told to fax in her request.

"I did, and I called to confirm she had received it," Redfern says.

And nothing for two years.

"Every few months I sent the fax again, or called and left a phone message," she says. "I considered it prudent follow-up."

"I heard nothing at all. I never even got a courtesy response."

Shoo, who lives near Ottawa, had started the same process four years earlier. "She even spoke to the same woman," Redfern says.

Shoo was told someone would get back to her. But in the six intervening years she has had the same result as her sister – nothing.

Shoo made about three follow-up calls in the first month after her initial request, leaving a message each time.

"Then I tried again a month later, and six months after that. And then I gave up. I thought, we're not going anywhere with this."

Redfern recognizes the health department is severely understaffed – about 35 per cent of positions are vacant, she notes. She was told in the first phone call that "my mother's health records exist but are archived in a seacan."

But after two years she feels enough is enough. This April 7 she wrote the letter to Curley.

"I am now obliged to ask you, as Minister of Health to help me with my request and ask your department to fulfil my request in a timely manner," she wrote. 

"My and my sister's lives are at stake.  We would like to know whether we are at risk.  We would like to take the necessary steps to be responsible and ensure our well being."

When Shoo heard what her sister had done, she followed up with her own letter to Curley, a couple of weeks later.

She faxed it to Curley's constituency office in Rankin Inlet, she says, and left a phone message the next day asking if they had received the fax. "I even spoke Inuktitut," she says. She also called the constituency office in Iqaluit.

So far, Shoo says, there has been no acknowledgement to either the fax or phone messages.

"When you don't know your family's medical history, that's something you think about all the time."

Redfern says this is a health concern for all Nunavummiut.

"I hear all the time in the community about people losing family members to cancer, often because of late detection, and even though they keep going back to the doctor.

Medical records available through hospital

Family medical records in Nunavut should be accessible through the Qikiqtani General Hospital, said Jessica Young, records manager for the Department of Health and Social Services.

See Brian Marshall at the new hospital and request a form that you will have to fill out and return, she said. Marshall's telephone number is 975-8600, extension 1404.

A phone call from Nunatsiaq News was not returned by press time.