Awareness • Early Detection • Treatment • Research • Survivorship

“I want to help change the face of lung cancer”: Young, non-smokers, women, increasingly being diagnosed

“I want to help change the face of lung cancer”: Young, non-smokers, women, increasingly being diagnosed
November 9, 2015 10:01 pm

By Elizabeth Payne, Ottawa Citizen

When she was told she had lung cancer, Elizabeth Dessureault says, she was unable to process what she was hearing.

“It didn’t make sense to me that a 26-year-old, healthy, non-smoker could get lung cancer.”

Hers is not the face usually associated with the disease.

But, as smoking rates decline, people like Dessureault — young, non-smokers, often female — are increasingly being diagnosed with the cancer that is the deadliest and receives less research funding than other major cancers.

While smoking is still the leading cause of lung cancer, the majority of new patients are people who never smoked or no longer smoke, according to a new report from Lung Cancer Canada, which paints a picture of uneven treatment across the country, poor early diagnosis and low research investment.

Dessureault’s case is typical of these new faces in some ways — by the time she was diagnosed, her non-small-cell lung cancer was already well advanced.

The first surgeon she saw told Dessureault there was nothing he could do and gave her a year to live.

It was very traumatizing.

What is far from typical is the fact that Dessureault was pregnant when she received the devastating diagnosis.

Her son Jack — born two months early so that his mother could receive more aggressive treatment — is now a thriving four months old.

But Dessureault’s experiences have inspired to her raise awareness about the new realities of lung cancer and the need for support.

I want to help change the face of lung cancer — Elizabeth Dessureault

There is a stigma that it is only a smokers’ disease. That is not the case, young lung cancer is on the rise, and we need funding for research to figure out why this is happening.

Dessureault will speak at the third annual Evening of Hope gala at Lansdowne Park in support of Lung Cancer Canada on Nov. 19. She also designed white bracelets that say “just breathe” to raise money for lung cancer awareness.

Before her world turned upside down, Dessureault was living in Fort McMurray, Alberta., with her husband Dax, an RCMP officer.

She had a “dream job”, teaching Grade 9, and the couple was expecting their first child.

Everything just seemed easy and wonderful.

That changed in a flash.

She and her husband were heading out one evening, when Dessureault coughed up some blood. They went directly to the hospital where she was diagnosed with pneumonia.

But a followup X-ray showed what doctors thought was pneumonia was actually a tumour and it had spread. Within days, she was sitting in a surgeon’s office in Edmonton who told her she had incurable cancer and should learn to accept it.

Dessureault, who grew up in Cornwall, returned to Ottawa, near her family, and saw Dr. Scott Laurie, an oncologist who specializes in lung cancer.

He started her on chemotherapy, despite her pregnancy. After her son was born at 32 weeks, the treatment was intensified.

When Dessureault arrived in Ottawa, she had a tumour in her lung that had spread to her chest, lymph nodes and the centre of her chest.

It was too big for radiation, but the chemotherapy shrunk the tumour enough that radiation was planned.

Meanwhile, Dessureault sent the tumour to the United States for genetic testing, at a cost of $5,000 — something not covered by the province — and learned that her cancer has a rare genetic marker.

Instead of radiation, she was prescribed a pill that has just recently become available in Canada. It has shrunk her tumours by more than 50 per cent, she says.

The drug, Xalkori, has virtually no side effects, allowing Dessureault to be at home looking after her baby.

Laurie said the pill is not a cure, but does make a difference for many patients who share the genetic mutation called ROS 1 — just about one per cent of patients with her form of lung cancer.

Laurie noted, however, that Dessureault had to pay for the genetic testing (testing for two other markers is paid for by the province) and that the drug costs thousands of dollars.

Such treatment would not be available to patients unable to afford the testing or without significant drug coverage, which speaks to the chronic underfunding of lung cancer treatment compared with that for many other cancers, despite the fact that more people die from it.

Many of his patients are older, very sick and addicted to tobacco, Laurie says, which means they aren’t out advocating for the cause.

It is crucial to have people like Dessureault speak about their experiences with lung cancer, Laurie said.

With breast cancer, there are a lot of young survivors who are outspoken, intelligent and of the right socioeconomic background to be able to advocate. With lung cancer, that is not terribly common. There are not a lot of people like Elizabeth out there.