CCSN’s spring All-party Cancer Caucus took place at Queen’s Park on April 24, 2024, with CCSN President & CEO Jackie Manthorne, Community Engagement Manager Lindsay Timm, and Communications Manager Trevor Smith-Millar in attendance.
Presenters were Dr. Karen Yeates, Professor in the Department of Medicine, Queen’s University, Stephanie Phan, Clinical Lead at the Cancer Rehabilitation and Survivorship Program at the University Health Network, and Nadia Hegab, a cancer rehabilitation patient who went through the Survivorship Program.
Remove All Age Limits to Cancer Screening
Manthorne welcomed MPPs and guests. She began by congratulating the Honourable Sylvia Jones, Deputy Premier and Minister of Health, for lowering the age for breast screening from 50 to 40, starting this fall. This announcement was made a few days after CCSN’s October 2023 All-party Cancer Caucus.
However, despite the changes, age limits for breast screening continue to cause problems for both those who are too young (under 50 until fall 2024, and under 40 after that) or too old (over 74) to be eligible for Ontario’s Breast Screening Program. Those who do not fall within the age limits must have a doctor’s recommendation to access breast screening.
Manthorne then stated that “nearly 20 per cent of women diagnosed with breast cancer are over the age of 75 – this is not an insignificant number! It is our belief that women and men of any age should be able to opt into the breast screening program!”
Manthorne then moved on to lung cancer screening in Ontario, something CCSN has brought to the attention of MPPs many times in the past. “I would also like to congratulate the Ontario government for adding a lung cancer screening site in Hamilton. But we need more screening sites to provide access to all Ontarians at risk, whether they live in urban or rural regions. Just compare Ontario to British Columbia, where their Lung Cancer Screening Program has 36 sites throughout the province! Let’s do better!
“And let’s not forget radon, which Health Canada estimates causes 16 per cent of lung cancer deaths in Canada; that is, 3,300 lung cancer deaths in Canada are related to radon, with approximately 850 Ontarians dying from radon-caused lung cancer every year. We must save lives by adding exposure to radon to Ontario’s lung cancer screening program AND by making radon tests free of charge to Ontarians with high radon exposure. Let’s be the first province in Canada to do this!”
Manthorne then raised the issue of the cancer risks related to firefighting, a topic that CCSN brought to the attention of MPP’s at the October 2023 All-party Cancer Caucus. “To be proactive, all firefighters should be encouraged to undergo regular screening for cancer and other illnesses that may be caused by their occupation. An average of 25 to 30 Ontario firefighters die of cancer every year in Ontario, so let’s catch cancer early!”
Note that shortly after CCSN’s April 2024 All-party Cancer Caucus, the Government of Ontario announced that it would extend Workplace Safety and Insurance Board coverage to wildland firefighters. For additional information, please refer to the article on this topic in this newsletter.
Finally, Manthorne touched on colorectal cancer, which has been a key part of CCSN messaging in many provinces. The diagnosis of colorectal cancer among younger people has been increasing, and screening only starts at age 50, with the result that an increasing number of young Ontarians are being diagnosed with advanced and often lethal colorectal cancer. This has to stop.
Manthorne emphasized that “the Canadian Cancer Survivor Network is calling for the removal of all age limitations in our cancer screening programs. Only by removing these limitations will we be able to diagnose cancer early and give patients a chance of a cure.”
Manthorne closed out her opening remarks by thanking MPP Coe for his ongoing support of our All-party Cancer Caucuses, and then introduced Dr. Karen Yeates, Professor in the Department of Medicine, Queen’s University.
Ontario Must Adopt HPV Screening to Combat Cervical Cancer
Dr. Yeates began by sharing data from the Cervical Cancer Elimination Initiative developed by the World Health Organization (WHO) to reduce cervical cancer cases to below four women per 100,000. This would be achieved by the widespread adoption of both the human papillomavirus (HPV) vaccine and increasing cervical cancer screening.
It is an initiative Dr. Yeates said is much needed in Ontario: “According to Cancer Care Ontario (CCO), every year 553 people are expected to be diagnosed with cervical cancer in Ontario, and 185 people will die from it. Cases have been rising at four per cent a year since 2015, the most significant increase in 40 years, with most cases in people under 50.”
Primary prevention can be achieved by widespread adoption of the HPV vaccine. The Canadian Partnership Against Canada has set a target of having 90 per cent of 17-year-olds fully vaccinated against HPV by 2025. Vaccines are currently available for young girls and women aged 9-45, and young boys and men aged 9-26.
But vaccines are only half of the picture when it comes to prevention. Screening in Ontario is recommended for anyone with a cervix who is, or whoever has been, sexually active. While current guidelines dictate that Pap (cervical cytology) tests should be done every three years starting at age 21, CCO is currently in the process of updating these guidelines.
Dr Yeates said that according to CCO, results have been mixed. “Cervical screening participation has continued to decrease over time. A large decrease occurred in the 21 to 24 age group, related to new evidence-based guidance which encouraged healthcare providers to delay initiation of cytology-based screening for immunocompetent people until age 25.” These trends decreased during the pandemic but are currently recovering.
However, there is currently a shift from Pap tests to a self-testing model, which Dr. Yeates said could help increase screening rates. “A report from the Canadian Medical Association Journal recommends HPV self-sampling as the primary screening method. The allows for less frequent testing and is better at detecting pre-cancers than Pap tests. It also provides a higher negative predictive value, which is more accurate and reassuring to those being tested. It collects an adequate sample, eliminates the requirement for Pap in almost 80 per cent of women, provides easier access to the test and can be done at home or in a private location at a health clinic.”
Currently, self-collected HPV tests are not covered by the Ontario Health Insurance Plan (OHIP), nor is it recommended by the Ontario Cervical Screening Program. However, Dr. Yeates pointed to British Columbia and Prince Edward Island, which have switched to HPV tests to detect cervical cancer. “In British Columbia, HPV screening will not replace the Pap test, but individuals and providers will be able to choose between them. At-home screening tests mean an increased uptake, and the results will be available in four to six weeks through a healthcare provider.”
Currently, Ontarians can opt to pay for an HPV test at the time they have a Pap test. Those with HPV-positive results need to visit a primary care provider for cytology testing, which is essential to determine a person’s risk of pre-cancer cells and cervical cancer.
Dr. Yeates recommended that “Canadian provinces need to invest in providing the highest quality (and easiest) screening test to women if we are going to move towards cervical cancer elimination. We must work together in Ontario to improve HPV vaccination rates, implement HPV testing as the primary screening method to rapidly increase screening uptake and coverage (and save lives), and enhance efforts for the follow-up of abnormal results and guide patients to follow-up screening and linkage to care. We must also increase political will and advocacy efforts: HPV testing is highly evidence-based, with a decade of success in Australia and years of success across the European Union.”
Manthorne returned to the podium to thank Susan, and then introduced Stephanie Phan, Clinical Lead at the Cancer Rehabilitation and Survivorship Program at the University Health Network. This program is offered through the Princess Margaret Hospital and provides specialized therapy to cancer survivors dealing with the long-term effects of their treatment and disease.
The Need for Cancer Rehabilitation is Growing
Stephanie Phan said the need for their services is growing. “There are currently 1.5 million Canadian adults living with cancer, and that is projected to increase 24 per cent over the next decade. While patients are living longer after cancer treatment, they’re also left with a lot of unexpected, late, and persistent effects that affect their lives after their treatment ends.
“After surgery, chemotherapy and radiation, the active part of treatment, a lot of patients enter a phase called the survivorship phase, and this is often a dark space that they don’t know how to navigate. They’re left feeling alone, abandoned, with unexpected side effects of treatment that they do not have the tools to manage, and some of this can happen right after treatment, or 40 years after treatment.”
Cancer survivorship includes both disease free remission and managed chronic or intermittent disease. Challenges facing these groups include side effects from cancer treatment that impair wellbeing, both physical and psychosocial functioning, and have a negative impact on quality of life. These include a litany of symptoms, as nearly all body systems are impacted by cancer. Some of these symptoms include fatigue, muscle loss, swelling (like lymphedema), cognitive, gastrointestinal and musculoskeletal impairment, as well as many psychological impairments.
“We can see from a national survey that those who have had cancer have poorer health compared to those who have not had cancer,” Phan said. “They have limitations to getting back to their activities and daily living. They are unable to go back to work. A majority of cancer patients would benefit from advice around lifestyle modification such as decreased smoking, reduced alcohol consumption, moving more, eating better; these things have positive impacts on quality of life, decreasing the risk of cancer coming back.
“As we all know, though, as human beings, translating knowledge to actual behavioral change is not easy, and imagine doing that when you already have a cancer diagnosis. You’re weaker, you’re feeling scared and vulnerable. This is where cancer rehab can make a difference.”
Cancer rehabilitation, Phan continued, is a process of restoring function, of helping cancer survivors regain physical and mental abilities to normal or near normal. It involves seeing someone as a whole person and not just as their cancer, hearing their story and how the disease impacted them, and partnering together to improve function and quality of life. Rehab also teaches self-management skills to build resilience and connectedness, empowerment, and confidence.
The Cancer Rehabilitation and Survivorship Program at Princess Margaret is a consultative risk-stratified impairment-driven care to all disease sites, meaning that the program employs a multi-disciplinary team which includes kinesiologists, physiotherapists, massage therapists, nutritionists, and social workers, among many others. The program offers specialized therapy for specific needs as well as group and individual rehabilitation through the CaRE Program. Since 2022, the program has delivered over 21,000 visits to 11,000 patients. The program is based around the principle of “supportive self-management,” which allows patients to optimize their health and improve their quality of life through personalized care.
Phan added that through patient reporting outcomes and tracking physical outcomes, data shows that the program works. “We improve their strength, their walking ability, their balance, their energy. We are allowing them to get back to the functional things that are important to them. We help them return to work and become a productive and contributing member of society. We help them validate what they’re feeling and going through, we give them tools to reframe their thinking. We also give them a healthy lifestyle to decrease the chance of cancer coming back.”
“I invite you to look beyond what we’re currently doing today to a broader horizon and a new possibility,” Phan said. “The best way to invent the future is to create it today. Let us all have a vision where cancer rehab and survivorship are valued as standards of cancer treatment, where we value the patient experience, where their needs are heard and understood, where we see ourselves in our patients. To give them the tools that they need to regain function, or as one patient put it: ‘to gain my life back after treatment’.”
“We must change our thinking; we must reexamine how we see things working and where we place value. So, I invite all of you to really think about where you place value in the importance of cancer rehab and survivorship. It’s never too late. While we cannot change the life story of cancer survivors, we can write a different ending to this chapter on cancer survivorship. Your choice matters. By funding cancer rehab and survivorship, you break the cycle and activate a new ripple effect, one that can leave a much more impactful legacy that will support cancer survivors now and in the future.”
Manthorne thanked Stephanie, and then introduced Nadia Hegab, a patient at the Cancer Rehabilitation Center at Princess Margaret Hospital. What follows is a summary of her speech.
I Hope to See the Day When Cancer Rehab is Offered to Every Cancer Patient
My husband and I traveled the world in pursuit of our careers. On April 15, 2002, we landed in Toronto, coming from San Francisco, California. Despite San Francisco’s charm, the kindness and genuine warmth of Canadians captured our hearts and encouraged us to finally settle and make Toronto our home.
In December 2021, our lives took an unexpected turn when I was diagnosed with high-risk myelodysplastic syndrome or MDS, a form of blood cancer. The prognosis was devastating. Without treatment and a bone marrow transplant, I would not survive for more than six months. I was immediately started on chemotherapy at Oakville Memorial Hospital, and was referred to Princess Margaret Hospital in pursuit of a donor for my bone marrow transplant. My husband immediately left his business to care for me and my 90-year-old mother, who lived with us at the time, while I had to go on short-term and then long-term disability leave.
Our income was significantly reduced, amplifying the challenges we faced. The care I received at Oakville Memorial and Princess Margaret exceeded all our expectations. The compassion, empathy, and professionalism demonstrated by the staff surpassed anything we had ever imagined. Each day, we were reminded of the privilege of being Canadian and “having access to universal healthcare without financial or other barriers,” as stated by the Canada Health Act.
We felt and feel very blessed.
During my visits to Princess Margaret, I met Paty Lopez, a kinesiologist at the Centre for Health Wellness and Cancer Survivorship. Paty invited me to participate in a group study that examined the impact of fitness and nutrition on cancer recovery. Encouraged by this initiative, I joined the exercise program at Wellspring, a charity for cancer patients, a month before my transplant.
Throughout the five weeks’ hospitalization for my bone marrow transplant, the strength and resilience I built through the Wellspring exercise program allowed me to maintain daily 20-to-30-minute walks around the ward, earning the title of “walker of the ward’’ and helped me cope with my anxiety during the procedure. I even managed to cycle on a stationary bike that I requested be brought to my room almost every day.
When post-transplant, I started struggling again with lack of energy and focus, and the inability to perform simple daily tasks. When my oncologist, Dr. Arjun Law, recommended the Cancer Rehab and Survivorship Program, I immediately jumped at the opportunity.
This comprehensive program, which included exercise, nutrition, mindfulness, coping strategies and many other useful topics, truly changed my life. From helping me regain physical strength to unraveling the mysteries of symptoms and their management, every aspect of the program contributed to my healing and resilience.
The Cancer Rehab and Survivorship’s exercise program proved essential in rebuilding my physical strength, while the cooking classes added a delightful dimension to my journey toward wellness, offering valuable insights into healthy eating habits. For the first time, I was able to name and understand symptoms like brain fog and fatigue and learn how to cope with them. I found that connecting with fellow cancer patients and sharing our journeys with each other provided me with a profound sense of understanding and companionship.
Together we uncovered the therapeutic benefits of certain foods like dates or salad in a jar, exchanged strategies for navigating daily challenges like using a Swifter mop to clean the shower walls, decoded seemingly mysterious symptoms such as the tingling sensations we felt when exercising due to clogged sweat glands from the chemotherapy.
It was comforting to know that I wasn’t losing my mind; I was no longer alone. Moreover, the unwavering support, professionalism, and care provided by the Cancer Rehab and Survivorship team was absolutely invaluable not just to me but also to my fellow cancer patients on the program.
I vividly recall a fellow group member who was single, and was struggling to balance work and treatment. She discovered through the Cancer Rehab and Survivorship Program that she was eligible for “short-term disability” – she did not really know what it was and was worried she would lose her only source of income if she took time off. The Cancer Rehab and Survivorship staff helped her navigate this newly discovered assistance, a lifeline she desperately needed. The opportunity for in-person interaction, whether with peers or professionals, provided all of us with a sense of community and empowerment. The program’s accessibility, offered at no charge and tailored to accommodate individuals with limited or no resources, underscored its commitment to inclusivity and support.
As per the Canadian Cancer Statistics released in November 2023, the probability of developing cancer over a lifetime is 45 per cent. Approximately 240,000 Canadians were expected to be diagnosed with cancer in 2023. The World Health Organization is also predicting that more than 35 million new cancer cases will be detected in 2050 worldwide, a 77 per cent increase from 2022. And while charities like Wellspring play a vital role in providing the support necessary for cancer patients in Canada, more resources are needed to accommodate all cancer patients nationally.
Life unfortunately does not stop when you have cancer. Your daily life issues don’t go away, in fact they might get more complicated. I lost my mother while I was still recovering from my transplant. I’ve listened to countless stories from fellow patients, some enduring even greater hardships and losses than mine in the battle against this relentless disease.
Though time is limited today to share all the stories I’ve heard, I can’t emphasize enough the profound and diverse ways the Cancer Rehab and Survivorship Program benefited me. It eased my anxiety, fortified my strength, and offered the crucial social and mental support needed to persevere. I firmly believe it can offer the same lifeline to others who are and will be grappling with cancer in the future, as indicated by the statistics shared earlier.
And I truly hope to live to see the day when the Cancer Rehab and Survivorship Program is offered to every cancer patient regardless of their financial means and location in Canada.
To conclude, I want to express my deep gratitude to the compassionate teams at Oakville Memorial and Princess Margaret Hospitals and the Cancer Rehab and Survivorship Centre; Dr. Andrea Lee, Dr. Arjun Law, Dr. Aniket Bankar, Dr. Eugene Chang, Stephanie Phan, Paty Lopez, Jillian Walker, Bernice DeSouza, the nurses, the administrators, the pharmacists, the lab technicians, thank you all.
I am forever deeply grateful. I also would like to thank all my friends and family for their invaluable encouragement and support throughout this journey. Finally, I am immensely thankful to both my devoted husband Ali, and my cherished friend and soul sister, Beth, both attending this All-party Cancer Caucus today. Their unwavering love has been the rock that carried me through this journey. I couldn’t have done it without you all.
Wrap-up and Discussion
After Nadia’s presentation, Manthorne offered closing remarks.
“The World Health Organization states that between 30 to 50 per cent of cancers are preventable. As a society, let’s work on preventing them. And then let us work on lessening the barriers to access to cancer screening so that cancer is diagnosed early. Let’s save lives. And remember that Cancer Can’t Wait, and in this time of climate change, include the continuation of cancer care in our emergency preparedness plans to ensure cancer care, from diagnosis to treatment, continues during future pandemics and natural disasters. Because cancer won’t wait in the future either.”
During a Q&A session at the end, several MPPs had questions about the presentation, including the cost of self-collected HPV tests as opposed to Pap tests. MPP’s thanked the speakers for coming to talk about the importance of HPV testing and cancer rehabilitation.
CCSN will return to Queen’s Park for the fall All-party Cancer Caucus on October 23, 2024.
April 2024 Ontario All Party Cancer Caucus Attendees
CCSN Staff
Jackie Manthorne, President & CEO
Lindsay Timm, Community Engagement Manager
Trevor Smith-Millar, Communications Manager
Eileen Tobey, Consultant, BeSpeak Communications
Presenters
Dr. Karen Yeates, MD, MPH, Professor, Department of Medicine, Queen’s University
Stephanie Phan, OT Reg. (Ont.), Clinical Lead, Cancer Rehabilitation and Survivorship
Nadia Hegab, Patient Advocate
Attending MPPs
The Honourable Stan Cho, Minister of Long-Term Care, Willowdale
The Honourable Nina Tangri, Associate Minister of Small Business, Mississauga-Streetsville
MPP Nolan Quinn, Parliamentary Assistant to the Minister of Health, Stormont-Dundas-South Glengarry
MPP Lorne Coe, Parliamentary Assistant to the Premier, Whitby
MPP Daisy Wai, Parliamentary Assistant to the Minister for Seniors and Accessibility, Richmond Hill
MPP Logan Kanapathi, Parliamentary Assistant to the Minister of Children, Community and Social Services, Markham-Thornhill
MPP Robin Martin, Parliamentary Assistant to the President of the Treasury Board, Eglinton-Lawrence
MPP Sheref Sabawy, Parliamentary Assistant to the Minister of Citizenship and Multiculturalism, Mississauga-Erin Mills
MPP Andrew Dowie, Parliamentary Assistant to the Minister of the Environment, Conservation and Parks, Windsor-Tecumseh
MPP Laura Smith, Parliamentary Assistant to the Minister of Children, Community and Social Services, Thornhill
MPP Natalia Kusendova, Parliamentary Assistant to the Minister for Seniors and Accessibility, Mississauga Centre
MPP David Smith, Parliamentary Assistant to the Minister of Labour, Immigration, Training and Skills Development, Scarborough Centre
MPP France Gelinas, Critic, Health, Nickel Belt
MPP Teresa Armstrong, Critic, Childcare, London-Fanshawe
MPP Chandra Pasma, Critic, Education, Ottawa West-Nepean
MPP Adil Samji, Critic, Health, Don Valley East
MPP Stephanie Bowman, Don Valley West
MPP Michael Mantha, Algoma-Manitoulin, IND