Researcher says national database will benefit N.L. cancer patients

Melissa Coombs was diagnosed with cancer in 2016 at the age of 35.  Her diagnosis and treatment happened in an “ideal situation,” she says. “I was very fortunate. I’ve got a horseshoe or something, or a four-leaf clover.”  

While on a trip to Toronto in September that year, Coombs developed a cough and started feeling fatigued. Initially, she didn’t think much of it, but then a bruise appeared on her forehead. She visited her family doctor and within a week was diagnosed with acute lymphoblastic leukemia — a cancer of the blood and bone marrow — after undergoing tests. Treatment began shortly after. 

Coombs remembers feeling “frustrated” and wanting to give up because of how long the treatment was taking. “I’m a social person, so I used to have activities that I would go to,” she says, explaining she would often have to miss gatherings and events. In November 2018, after two years fighting the illness, Coombs’s cancer went into remission.

In 2023 she joined the Marathon of Hope Cancer Centres Network’s Patient Working Group, where she shares her personal experience in order to support cancer research and treatment. “Everyone should have the same standard of care,” she says. The patients’ group unites individuals across the country who have personally experienced a cancer diagnosis and treatment, as well as those who have served as caregivers for someone with cancer. Members participate in research, give presentations and work on internal and external communications.

The group has helped launch a grant that funds research in areas identified by the group’s members, such as patient involvement and engagement in precision oncology research, and survivorship care plans and post-treatment resources. The group helps researchers connect with cancer patients, Coombs explains, adding some researchers have “never connected with a patient before.” The group’s 34 volunteers gather every six weeks — so far twice in person, once at a conference, and once at the annual meeting.

While her cancer diagnosis and treatment process were “ideal,” cancer patients’ experiences differ vastly across the province. Coombs says that visiting larger towns for cancer care can financially burden people living in rural areas of the province. “I was very fortunate that I had my own accommodations in St. John’s,” she says, explaining she met cancer patients from other regions who were stuck in St. John’s for long periods of time without social support. 

The Gold Cohort database

Newfoundland and Labrador has one of Canada’s highest cancer rates and one of the highest cancer-related mortality rates. The province also has the highest colorectal cancer incidences and mortality rates in the world. Sherri Christian, a biochemistry professor at Memorial University, says researchers don’t know why the province’s cancer rates are so high, but several risk factors might contribute. She says the province has fewer resources like doctors, which means fewer specializations in different types of cancers. “That one doctor is probably fantastic, but might not know some specific nuance” of cancers that fall outside their areas of specialization.

Christian says this is where the Marathon of Hope Cancer Centres Network can help. The network—led by the Terry Fox Research Institute and the Terry Fox Foundation—brings together cancer researchers, doctors, patients, and survivors nationwide to improve cancer diagnoses, predict how different patients will respond to treatments and deliver more personalized cancer treatments. The network includes over 40 institutions country-wide. 

Its Gold Cohort database contains clinical and genomic data on over 15,000 cancer patients across Canada. To date, over 7,600 cancer cases have been added to the database.

The problem with cancer is that it isn’t one specific illness, says Christian. There are different types of cancers, such as leukemia and melanoma, each of which can be further categorized. “We really need to know a whole bunch about that person’s cancer because every cancer is a little bit different.”

The network allows oncologists in Newfoundland and Labrador to find specialists in other provinces. “Now that one doctor in Newfoundland can talk to those 10 doctors in Toronto […] and those people who have had more experience can come back and say, try this,” Christian explains. 

Christian is also the Atlantic Cancer Consortium co-lead. She says individual provinces and cancer research centres don’t have enough information to tackle every rare case efficiently. “We just don’t have enough researchers or clinicians, or even patients, to figure out the patterns that we need to figure out in order to find these changes [in cancer cells].”

The Atlantic Cancer Consortium is a member of the Marathon of Hope Cancer Centres Network, bringing together cancer researchers, doctors, and patients from across the Atlantic region. Included within this group is Biobank N.L., which collects biological samples from various health conditions, including cancer, to support scientific research and expand knowledge in the province.

As patients in the province consent to their data and cancer samples being added to the biobank, researchers in the province can access it, explains John Thoms, the provincial lead at Biobank N.L. Thoms says the provincial biobank contributes some of the collected samples to the network’s national database, and that those specimens “are critical assets available to any researcher.”

Christian says Biobank N.L. is essential because researchers need larger samples of cancer data to study how the same cancer can progress differently in different individuals, and why a patient might respond better to one treatment. A national database will allow researchers and doctors access to thousands of previous diagnoses and treatments to tackle rare cancer cases across the country. “So maybe you have a melanoma, but it’s not like the rest of the melanomas. It’s unique. We can target that uniqueness,” Christian adds, explaining the network’s goal is to advance precision treatment, which allows doctors to treat patients based more on their specific needs. 

Thoms, a radiation oncologist, says factors such as other health conditions and a patient’s ability to tolerate specific treatments like radiation can also influence which cancer treatment is most effective. The cancer database, he says, will help streamline the treatment process by allowing doctors to offer the best treatment upfront, rather than “trying drug x first and then not working, then moving on to the next option.” 

Future of cancer care

Thoms says other factors, like higher rates of smoking and drinking and lower economic status, can play a role in developing cancer. In 2019, Newfoundland and Labrador had the highest per capita consumption of alcohol, and in 2020 it had the highest rate of smoking.

Sevtap Savas, a human genetics professor at Memorial University, says a lack of safe, healthy environment and diet can also increase the chances of cancer. Advanced age is one of the most significant factors in developing cancer;  in Canada, nine out of 10 people diagnosed with cancer are over 50. Newfoundland and Labrador has the oldest population in Canada, with over 23 per cent of residents aged 65 or older. The province also has the most rapidly aging population.

Savas is “excited” knowing the database will play a critical role in solving cancer-related issues for patients and families in the future, while helping train the next generation of scientists. “In so many ways, it’s an incredible resource for the future,” she says.

Thoms says the network is a “huge” endeavour. “It takes time to generate that kind of funding and interest within the group.” Savas says building the collective may have taken a while, but “we have it right now. We cherish it. We are very motivated to move it forward.”

The network was launched in St. John’s on April 12, 2019. Operations officially began two years later, in June 2021; Memorial University and NL Health Services joined the project at the end of 2022. 

Christian says the network’s future goals include sequencing the cancers of all patients in Canada so they can immediately receive the best treatment for their specific cancers. “The vision is that we will get to a point where people just live with cancer, right? Because we can target it. We can have people be on the right medication for a really long time, and so instead of dying from cancer, you’re living with cancer,” she said.

Coombs says she hopes cancer patients and their caregivers realize they can make a difference in cancer care. “You don’t need to have a science degree to sit at all these committees because we always say you are the expert, because you have the lived experience.

“No matter who you are or where you come from — if you’re in northern Labrador, or what your academic status is, or education status; no matter what kind of demographic you are, you have a seat.”

The Marathon of Hope – Atlantic Cancer Consortium is hosting a free public virtual conference on cancer and precision medicine in Atlantic Canada on May 15, 2025. Savas says the conference will allow researchers, healthcare professionals, and advocates to share the latest cancer research and treatment advancements, as well as information about available support services and out-of-the-clinic services.

“Oftentimes, this kind of information is scattered and in multiple places, and as such, having them together presented in a public event like this is very useful for those who may need this variety of cancer-related information,” Savas says.