CCSN Holds First All-party Cancer Caucus in British Columbia

Health Minister Dix Invites CCSN back in 2024

The Canadian Cancer Survivor Network (CCSN) held its first All-party Cancer Caucus on November 29, 2023, at the Grand Pacific Hotel in Victoria, British Columbia. Lindsay Timm, CCSN’s Community Engagement Coordinator, and Trevor Smith-Millar, CCSN’s Communications Manager, were joined by two of CCSN’s partners: Dense Breasts Canada and the Colorectal Cancer Resource and Action Network (CCRAN). Michelle Di Tomaso, co-founder of Dense Breasts Canada and cancer survivor, attended in-person, with Dr. Paula Gordon, Medical Advisor, attending virtually. Cassandra Macaulay, Senior Manager of Programs and Education, and patient advocate Tim Hoskin represented CCRAN. CCSN consultant David Klug of Konsul Strategies also attended.

While CCSN President & CEO Jackie Manthorne was not able to be at the event, she pre-recorded her comments. She outlined several CCSN initiatives, including the five Cancer Can’t Wait Leger surveys on COVID-19 disruption of Cancer Care in Canada, particularly the first report, “Thrown Under the Bus.” “From the title, it was clear that covid has had a huge impact on cancer care. Cancer Screening programs closed right across the country, resulting in long wait times, some of which still exist today. Important tests were postponed or cancelled outright, and treatments were interrupted. These delays resulted in people being diagnosed at later stages, requiring more intense treatment.”

Manthorne congratulated British Columbia on its lung cancer screening program for covering every region of the province. However, more can be done. “We would like to see lung cancer screening available to a wider population. According to Lung Cancer Canada, from 2011 to 2015, 17 per cent of lung cancers were diagnosed in Canadians between 70 and 84, and 14 per cent were diagnosed in people over 85. This is 31 per cent who find it difficult to access screening but are often healthy enough to benefit from early diagnosis and treatment.

“And let’s not forget radon, which Health Canada estimated causes 16 per cent of lung cancer deaths in Canada. Every year 3,300 lung cancer death in Canada are related to radon. Developing lung cancer due to radon is even higher for smokers. Radon is also the leading cause of lung cancer deaths in non-smokers, and the second leading cause for smokers. We must save lives by adding exposure to radon to British Columbia’s lung screening program and making radon tests easily accessible and free of charge to British Columbians,” Manthorne added.

Manthorne then spoke about British Columbia’s presumptive legislation that include wildland firefighters in worker compensation programs. Unlike most provinces, British Columbia covers wildland firefighters in presumptive legislation, but this information is not on the WorkSafeBC website.

She reminded Caucus members that the World Health Organization states that 30 to 50 per cent of cancers are preventable. “As a society, let’s work on preventing them, and then let’s work on lessening all barriers to access to cancer screening, so that cancer is diagnosed early. Let British Columbians self-refer to screening programs at any age. Let’s work together to save lives. And remember that Cancer Can’t Wait, and in this time of climate change, we must include the continuation of cancer care in emergency preparedness plans, because cancer won’t wait in the future either.”

What is the Canadian Cancer Survivor Network?

Lindsay Timm then described CCSN’s objectives, programs, and activities. Timm provided details about CCSN’s two webinar series, entitled Promoting Cancer Patient Engagement through Educational Webinars and Cancer Survivor to Financial Survivor. She also described CCSN’s legislative work, including the establishment of All-party Cancer Caucuses in Ontario, Saskatchewan, and Alberta as well as legislative receptions.

Timm also outlined the Science of Cancer E-education Course, which is designed to prepare cancer patients, caregivers, and survivors to sit on research peer review panels. To date, hundreds of cancer patients, caregivers, survivors, and volunteers have taken the course, and are now on boards, committees, and research peer review panels.

Above all, Timm shared the core objectives of the group: To encourage and promote engagement among survivors and patients, work with governments and all political parties to educate and promote positive policy ideas, and empower survivors as advocates.

Dr. Paula Gordon: “We’re once again asking for your help”

Timm then introduced Dr. Paula Gordon, Medical Advisor to Dense Breasts Canada, and recent recipient of the Order of Canada. Dr. Gordon, who attended virtually, is a breast radiologist who has been practicing in British Columbia for 40 years.

“British Columbia was the leader in breast screening decades ago, when it offered women mammograms starting at age 40,” Dr. Gordon said. “Only 50 per cent of eligible women aged 40 to 74 are having screening mammograms. British Columbia’s screening attendance rate is far below the national average, and we need to remedy that.”

Dr. Gordon went on to say breast cancer is the most common cancer in British Columbian women and makes up a third of all cancers diagnosed. In 2021, over 4,000 women in BC were diagnosed, and the incidence rate is growing in younger women. Dr. Gordon stressed the importance of early detection, stating that when breast cancer is caught at stage one, the five-year survival rate is 100 per cent. However, stage four breast cancer has a 22 per cent survival rate, and this is when the cancer is most often detected as a lump in the breast.“ We want to find cancer early to save lives, but also so that women can avoid harsh therapies like chemotherapy and mastectomy.  Mammograms are also the way women can find out if they have dense breasts. For 30 years, British Columbian radiologists were including this information in the mammogram reports, but the screening program did not share it with the family doctor or the patient.”

“Five years ago, Michelle Di Tomaso and I came to Victoria to speak to MLAs from all parties about women not being told their density or the associated risks. You took action to ensure that information was given to women. In October 2018, British Columbia became the first province to inform all women their breast density category in their mammogram report letter. You made it happen!”

But Dr. Gordon stressed that despite the advances, British Columbia was still failing women “We’re here again today five years later to ask for your help because there is inadequate access to supplemental screening with ultrasound to women with dense breasts. Mammograms don’t find all cancers. Having dense tissue is the most common reason for a cancer to be missed, and 43 per cent of women over age 40 have dense breasts, while Asian and Black women have higher rates of dense breasts.”

“We’ve known for almost 30 years that ultrasound finds additional breast cancer missed on mammograms with women with dense breasts and we can find many of those cancers when they’re small and prevent them from become interval cancers [the cancers that develop between screenings]. And we do that with supplemental screening.”

Dr. Gordon said that in the first year of using ultrasounds, her practice found seven cancers per 1,000, more than in older studies. This is in line with 2022 data and compares with five cancers per 1,000 detected by mammograms. She also pointed out that on top of saving lives and improving the quality of those lives, supplemental screening results in healthcare savings, with treatment costs for stage four patients nearly ten times the amount for stage one patients ($56,000 maximum per patient versus $500,000). Ultimately, screening women earlier with supplemental screening is cheaper than treating advanced cancers.

However, Dr Gordon added, very few locations do supplemental screening for those with dense breasts, and this is a direct result of a shortage of trained technologists and radiologists specialized in breast cancer screening. The lack of a fee code was also listed as a reason why there isn’t more supplemental screening. Dr Gordon called for more physician education, and more incentives to keep trained technologists and radiologists in the province.

For more information on how breast density hinders the search for cancer, click here.

Michelle Di Tomaso: “This is low-lying fruit that will save British Columbian Lives.”

Michelle Di Tomaso is a co-founder of Dense Breasts Canada. She was diagnosed with stage 2B breast cancer, and had to endure chemotherapy, radiation, a double mastectomy, and three unsuccessful reconstruction surgeries. She told the MLAs that she still lives with chest pain from the surgery and neuropathy.

This was all due to Di Tomaso’s breast density. “I was told that my cancer had been growing in me for at least three years, and the reason it was not caught on my mammogram was because I had dense breasts. To add salt to that wound, I was then told that had I been given an ultrasound, the cancer may have quite possibly been caught at an earlier stage. It was infuriating.

“I am not exceptional – I am just lucky. I had a three and a five-year-old that I so desperately wanted to see grow up. And we are lucky that I lived; because out of this experience, it has brought us all together to improve breast screening practices for women in British Columbia. And I know you will do this because British Columbia does not follow; we lead, and we get this done.”

Di Tomaso pointed to how British Columbia was a world leader of breast cancer screening when the new guidelines were introduced years ago, with researchers in Australia as calling it the “Cadillac of breast screening.” She added that BC women have been going to their doctors and asking for referrals since then. However, the next steps mean looking for a clinic that will do a screening, and the scarcity of those clinics means that they will be put on a long waitlist.

“The issue is solvable, but we need to think outside of the box. I know the ministry wants to implement innovative techniques that help the people in British Columbia that can be implemented nationally. In British Columbia, there are many options that can be considered for imaging.” She pointed to the screening program at West Coast Medical Imaging, which, with the use of ABUS ultrasound scanners, have nearly single handedly cut down the waitlist for breast cancer screening. “Since their inception in August, they have screened nearly 600 women, and in that time, they found four very early cancers that were not seen on their mammograms.”

Di Tomaso praised the Victoria General Hospital, which funded software that improves cancer detection, and expanded their screening hours. She pointed to a recent upgrade of MRI machines to accommodate up to 90 per cent of women so they can be biopsied correctly. She also pointed to best practices in other provinces and said that British Columbia can learn from the results of Ontario’s supplemental screening proposals. In Alberta, ABUS and MRI scans were automatically provided to women with dense breasts after their mammograms.

She urged MLAs to continue to work across the aisle to close the gap in breast cancer screening in the province. She also echoed Dr. Gordon’s calls for expanded care and administrative tweaks. “Our frontline workers caregivers, charities, and foundations in our communities want to help, but we need your help too. You have a huge opportunity to take what you have already started over the finish line. This is low hanging fruit that will save and change the course of many British Columbians’ lives, and make our province the leader that it once was.”

Cassandra Macaulay: “Colorectal Cancer in Young People on The Rise”

Cassandra Macaulay, Senior Manager of Programs & Education at Colorectal Cancer Resource and Action Network, spoke next. She introduced CCRAN, which provides support, education, and advocacy to patients and their caregivers to help improve patients’ quality of life as well as their longevity.

She began with a brief overview of colorectal cancer (CRC) and how it affects the human body. She pointed out that 58 British Columbians are diagnosed with colorectal cancer every week, with 22 dying. Canada has one of the highest incidence rates of colorectal cancer in the world and is the second leading cause of cancer death in the nation.

Macaulay said that British Columbia Cancer has already adopted Fecal Immunochemical Test (FIT) in their screening protocols. “Since the introduction of colorectal cancer screening programs across the country, there has been a marked decline in colorectal cancer incidence rates, especially in the 65+ age group. This shows that screening works.”

However, the uptake of screening is low, with some 44 per cent of eligible British Columbians having completed a FIT test within the last two years. This falls below the national average. There are also large equity gaps in screening, with Caribbean and Latin American immigrants having the lowest uptake. Rural and remote patients, people with mental illness, and non-English or French speakers were also particularly disadvantaged.

The most urgent need for reform is in screening of young people for colorectal cancer. “Incidence of colorectal cancer in adults under the age of 50 is rising at an alarming rate,” Macaulay said. “These British Columbians are ineligible for asymptomatic screening, and often dismissed by healthcare professionals when presenting with symptoms based purely on their age. Young British Columbians are being diagnosed at a later stage with more lethal disease characteristics. Early-age onset colorectal cancer is missed by British Columbia’s screening program.”

Macaulay pointed to a survey published in JAMA Oncology that indicated that reducing the screening age for colorectal cancer would not only save lives, but healthcare costs as well. The report says that having the screening age set to 45 could see healthcare savings of up to $719 million dollars. This number jumps to $1.1 billion if the screening age is dropped to 40.

Macaulay had the following recommendations for MLAs:

  • Thoughtful evaluation of the age requirements associated with screening eligibility.
  • Engagement with patient advocacy groups to increase uptake of screening.
  • Engagement of local communities and the collection of local-level data to create detailed profiles of specific populations.
  • Conduct more research to better understand the barriers, facilitators, and optimal approaches to increasing screening uptake among population groups that experience inequities.
  • Collaboration with First Nations, Inuit, and Métis communities to develop effective First People-specific approaches, grounded in reconciliation, for increasing uptake of colorectal screening.
  • Look for and adopt innovative new solutions, including embracing technology and education.

Macaulay recently presented a webinar with the Canadian Cancer Survivor Network about the rising rates of colorectal cancer in young people. Click here to view it.

Tim Hoskin: “British Columbia’s Current Screening Program Did Nothing to Prevent Me from Contracting Colorectal Cancer”

This husband and father of two was very direct about what he had gone through as a colorectal cancer patient. “Cancer does not care if I fight it, hate it, rage against it,” Hoskin said. “It will take years off my life, leaving me scared, and inflicting immeasurable pain on my family and friends. And for the most part, for most people, colorectal cancer is completely avoidable with early detection.

“Looking back with hindsight, my cancer could have been caught much earlier if the medical community, and I myself were more in-tune with the fact that more young adults are getting colorectal cancer, and if I was eligible for screening.”

Hoskin grew up in Lynn valley in North Vancouver, spending 22 years in Squamish working with governments and non-profits, and spent many hours in service to his community as a volunteer. Hoskin has stage four rectal cancer that has metastasized to his liver. His symptoms included bowel pain, fatigue and bloating so severe that he was tested for several different conditions, including celiac disease. He became a vegetarian, stopped drinking alcohol, and ate gluten free, but nothing helped.

“No one thought to do a colonoscopy, even though I was displaying classic colorectal cancer symptoms for years before my diagnosis. Then on a fateful day in 2015, I passed quite a bit of blood in my stool. I went to the local medical clinic, and after a quick check by the doctor, the concern in her eyes told me I was facing something very serious.”

Hoskins underwent a colonoscopy and biopsy at 45-years-old. A few months later, he had surgery, where much of his rectum and colon was removed. Luckily for Hoskins, the surgeon was able to make sure that he was able to live without needing a colonoscopy bag. However, he now suffers from Low Anterior Resection Syndrome, a side effect of the surgery that results in pain, fecal incontinence, and frequency of bowel movements.

A few years after that surgery, Hoskins received the news that the cancer had metastasized to his liver. After several failed procedures, he was no longer able to have another liver resection surgery. His career stalled, and the stress of his diagnosis has affected everyone in his family.

“Our hectic but happy family life that we once knew ended abruptly, and a new reality set in for our family. My wife has continued to work, but as you can imagine, she’s had to take some time off here and there due to my sickness, or due to the stress on her and my family. The medical care I have received has been amazing, and I am very grateful. It’s just that no one, including me, thought that I might have colorectal cancer, even when presenting classic colorectal cancer symptoms. This was because of my age, and that needs to change.”

Hoskin said that more screening will save lives and spare many more from the horrors of cancer. He called on MLAs to drop the screening age, making the economic case that he is now consuming healthcare resources and on public assistance. He says he has shifted from a contributing citizen to a dependent patient.

People should be tested to see if there are symptoms of colorectal cancer. People should be encouraged to get colonoscopies, despite the stigma around them. He called for more education around symptoms, and to lower the standard screening age to 45 years or less. He said this will lead to healthcare savings, economic savings, and saved lives.

Hoskins has since undergone a full liver transplant that has the potential to cure his cancer.

Health Minister Dix’s remarks “Come back again!”

Health Minister Andrian Dix spoke of the need for his ministry to act on the recommendations, and his experiences dealing with cancer in his own family. He praised the opposition party for their work in getting cancer care to where it is today in British Columbia when they were in power, while also committing to improving the system. Such bi-partisan gestures are at the core of what CCSN’s All-party Cancer Caucuses are about. Minister Dix added that he was looking forward to CCSN returning in 2024.

British Columbia All-party Cancer Caucus

Hon. Adrian Dix – Minister of Health – Vancouver-Kingsway – BC NDP
Hon. Anne Kang – Minister of Municipal Affairs – Burnaby-Deer Lake – BC NDP
Hon. Sheila Malcolmson – Minister of Social Development and Poverty Reduction – Nanaimo – BC NDP
Hon. Katrine Conroy – Minister of Finance – Kootenay West – BC NDP
Hon. Grace Lore – Minister of State for Childcare – Victoria-Beacon Hill – BC NDP
Hon. Jennifer Whiteside – Minister of Mental Health and Addictions – New Westminster – BC NDP
Hon. Selina Robinson – Minister of Post-Secondary Education and Future Skills – Coquitlam-Maillardville –BC NDP
Ben Steward – Kelowna West – BC United
Michael Lee – Vancouver-Langara – BC United
Rick Glumac – Port Moody-Coquitlam – cancer survivor – BC NDP
Garry Begg – Surrey-Guildford – BC NDP
Henry Yao – Richmond South Centre – BC NDP
Jinny Sims – Surrey-Panorama – BC NDP
Ronna-Rae Leonard – Deputy Chair of the Committee of the Whole – Courtenay-Comox – BC NDP
Coralee Oakes – Cariboo North – BC United
Joan Phillip – Vancouver-Mount Pleasant – BC NDP
Brittny Anderson – Nelson-Creston – BC NDP
Susie Chant – North Vancouver-Seymour – BC NDP
Elenore Sturko – Surrey South – BC United
Renee Merrifield – Kelowna-Mission – BC United
Michele Babchuk – North Island – BC NDP
Janet Routledge – Burnaby North – BC NDP

Caucus member regrets
Hon. Dan Coluter – Minister of State for Infrastructure and Transit – Chilliwack – BC NDP
Adam Olsen – Saanich North and the Islands – BC Green Party
Sonia Furstenau – Cowichan Valley – BC Green Party
Todd Stone – Kamloops-South Thompson – BC United
Karin Kirkpatrick – West Vancouver – Capilano – BC United

CCSN and Partners
Jackie Manthorne – President & CEO, Canadian Cancer Survivor Network
Lindsay Timm – Community Engagement Manager, Canadian Cancer Survivor Network
Trevor Smith-Millar – Communications Manager, Canadian Cancer Survivor Network
Dr. Paula Gordon – OBC, MD, FRCPC, FSBI, Medical Advisor, Dense Breasts Canada
Michelle Di Tomaso – Co-founder, Dense Breasts Canada
Cassandra Macaulay – Senior Manager of Programs & Education, Colorectal Cancer Resource & Network
Tim Hoskin – Colorectal cancer patient/advocate
David Klug, Konsul Strategies