Optimizing Care Pathways from Screening/Detection to Survivorship for Early Age Onset Cancer Patients in Canada
Simple Summary
Abstract
1. Introduction
2. Building a Primary Care System That Elevates EAOC Awareness and Screening/Detection
2.1. Supporting PCPs in Helping to Increase Index of Suspicion for EAOC
2.2. Balancing the Benefits of Early EAOC Detection with System-Level Realities
3. Critical Need for Earlier Screening/Detection of Early Age Onset Colorectal Cancer (EAOCRC)
3.1. Lowering the Screening Age for CRC to Align with the New Epidemiology of This Disease
3.2. Creating the System Infrastructure to Handle Increased Screening Capacity
- Establishing priority groups within screening eligibility will help ensure that high-risk individuals are assessed preferentially.
- Use of biomarker testing to predict the presence of adenomas that may identify high-yield scores can further refine patient prioritization.
- Allowing patients to self-refer for a FIT screening ensures that healthy low-risk patients are not proceeding directly to more invasive testing, and diverting resources from higher-risk populations.
- Finally, the integration of multidisciplinary care models—such as nurse-led endoscopy programs to facilitate scoping—can further expand capacity and alleviate system burden.
4. Supportive Care Needs of EAOC Patients from Diagnosis to Survivorship
4.1. The Results of CCRAN’s National Pan-Tumour Patient Survey
4.1.1. Demographics
- A total of 143 respondents between 18 and 49 years of age completed the online survey.
- Most respondents were from Ontario (38%), British Columbia (20%) and Alberta (14%), reflecting the population sizes as well as the locations of major cancer centers.
- Multiple tumour types were represented, most commonly breast, CRC and blood.
4.1.2. AYA/EAOC Clinic Access and Utilization
- In total, 83% of respondents did not have access to an AYA/EAOC clinic and the majority of patients believed access would have significantly or somewhat improved their care (45% and 41%, respectively).
- Of those with access to a dedicated clinic, half used the service regularly and 35% occasionally; the programs to support mental health, nutrition and fertility were most commonly used, aligned with the primary unmet needs identified by EAOC patients in traditional models of care.
- For 65%, the AYA/EAOC clinic was located at their treatment center; 29% utilized a virtual clinic, a helpful modality for jurisdictions without specialized EAOC care.
- Only 29% of referrals originated from oncologists, underscoring the absence of a standard referral pathway.
4.1.3. Outcomes and Impact
- Those who received care at an AYA/EAOC clinic were less likely to feel socially disconnected, experience challenges with coordinating care, and report long wait times; however, they expressed unmet needs including support related to fear of relapse, employment, education and financial concerns.
- Patients seen at an AYA/EAOC clinic were less likely to have to coordinate their own care, than those in traditional care models (18% vs. 51%, respectively).
- Visible gaps exist across both models of care with respect to survivorship, particularly for women; only a minority of patients felt very well-supported in care coordination (26%), social re-integration (10%) and long-term side effect management (9%).
- Additionally, 79% did not receive a survivorship care plan, indicating a system-wide weakness.
4.2. Opportunities for System-Level Improvements in AYA/EAOC Care
4.2.1. Sexual Health and Fertility
4.2.2. Financial Support
4.2.3. Survivorship
5. Conclusions
Author Contributions
Funding
Data Availability Statement
Acknowledgments
Conflicts of Interest
Appendix A. Conference Organization
- Dr. Michael Raphael (Odette Cancer Centre, Sunnybrook Health Sciences Centre, Toronto, ON, Canada)—Chair;
- Dr. Shady Ashamalla (Odette Cancer Centre, Sunnybrook Health Sciences Centre, Toronto, ON, Canada);
- Dr. Tanya Chawla (Joint Department of Medical Imaging, University of Toronto, Mount Sinai Hospital, Toronto, ON, Canada);
- Dr. Mary Jane Esplen (Department of Psychiatry, University of Toronto, Toronto, ON, Canada);
- Dr. Jason Karamchandani (Department of Pathology, McGill University, Montreal, QC, Canada);
- Dr. Stuart Peacock (BC Cancer Research Institute, Vancouver, BC, Canada);
- Mr. Steve Slack (EAOC Patient Expert; Colorectal Cancer Survivor);
- Ms. Robby Spring (EAOC Patient Expert; Breast Cancer Survivor)
Appendix B. Collaborating Patient Advocacy Groups
| AYA Canada | Immunocompromised People Are Not Expendable |
| Brain Tumour Foundation of Canada | Inspire Health |
| Canadian Breast Cancer Network | Leukemia & Lymphoma Society of Canada |
| Canadian Cancer Survivor Network | Lung Cancer Canada |
| Canadian Immunocompromised Advocacy Network | My Gut Feeling Stomach Cancer Foundation of Canada |
| Canadian Organization for Rare Disorders | Myeloma Canada |
| Childhood Cancer Canada | Pancreatic Cancer Canada |
| Cholangio-Hepatocellular Carcinoma Canada | Prostate Cancer Foundation Canada |
| Craig’s Cause Pancreatic Cancer Society | Quebec Cancer Coalition (Coalition priorité cancer au Québec) |
| GIST Sarcoma Life Raft Group Canada | Young Adult Cancer Canada |
| HPV Global Action |
Appendix C. Conference Registrants
Appendix D. Conference Agenda
| Session | Speakers |
|---|---|
| Day 1: From Gaps To Action: Transforming Early Age Onset Cancer Detection, Diagnosis & Care Through Policy & Innovation Moderator: Cassandra Macaulay, Chief Research Officer, CCRAN | |
| Symposium Opening | Cassandra Macaulay, Chief Research Officer, CCRAN |
| Welcome from CCRAN’s President & CEO | Filomena Servidio-Italiano, President & CEO, CCRAN Jessica Dasler, Stage 4 Colorectal Cancer Survivor; Patient Advocate; CCRAN’s My Lung Mets and My Advocacy Coach |
| Addressing the Detrimental Impacts of Early Age Onset Cancer: Key Learnings from CCRAN’s 2024 Early Age Onset Cancer Symposium | Dr. Michael Raphael, Medical Oncologist, Early Age Onset CRC Cancer Clinic Lead, Odette Cancer Centre, Sunnybrook Health Sciences Centre; Co-Chair, Medical & Scientific Advisory Board, CCRAN |
| A National Priority: Lowering the Screening Age for Colorectal Cancer | Moderator: Dr. Michael Raphael, Medical Oncologist, Early Age Onset CRC Cancer Clinic Lead, Odette Cancer Centre, Sunnybrook Health Sciences Centre; Co-Chair, Medical & Scientific Advisory Board, CCRAN Caregiver: Amanda Conlon, Co-Founder & Executive Director, Circle Back Foundation; Cousin succumbed to Stage IV Cancer Panelists: Dr. Aparna Parikh, Director of CRC Medical Oncology Research & Young Adult Colorectal Cancer Center, Mass General Brigham Cancer Institute Dr. Darren Brenner, Armstrong Investigator in Molecular Epidemiology; Associate Professor, Depts. of Oncology and Community Health Sciences; Division Head—Preventive Oncology; Director of Research—Forzani and MacPhail Colon Cancer Screening Centre; Director—Cancer Screening, Detection and Risk Reduction Program, University of Calgary Dr. Gary Wild, Clinical Gastroenterologist & Professor of Medicine, McGill University Health Centre Dr. Usmaan Hameed, Colorectal Surgical Oncologist; Clinical Lead, GI Cancer Program & Division Head, General Surgery, North York General Hospital |
| Considering Cancer in Young Adults: Elevating Awareness & Detection Readiness in Primary Care | Moderator: Dr. Aisha Lofters, Family Physician, Women’s College Hospital; CIHR-PHAC Applied Public Health Chair; Associate Professor, Department of Family & Community Medicine, University of Toronto Patient: Michelle Burleigh, Acute Promyelocytic Leukemia Survivor; Patient Advocate; Founder & Patient Consultant, The Clarity Lab; Co-Chair, Canadian Immunocompromised Advocacy Network; Co-Chair, Cancer Action Now Alliance Panelists: Dr. Paul Dhillon, Rural Family Physician, Vancouver Coastal Health, BC; 39 Brigade Surgeon, Canadian Armed Forces; Clinical Associate Professor, UBC Trudy Matwiy, Master of Nursing/Nurse Practitioner, Family/All Ages; Nurse Practitioner Primary Care Program (NPPCP); Director of Primary Care, Nurse Practitioner Association of Alberta Joan Heatherington, Acute Care Gastroenterology Nurse Practitioner, Red Deer Regional Hospital |
| Catching Cancer Early: Reframing the System Value of Early Detection in Young Adults | Moderator: Dr. Tanya Chawla, Associate Professor & Staff Radiologist, Joint Department of Medical Imaging, University of Toronto Patient: Laura Floyd, Stage III NSCLC Lung Cancer Patient; Patient Advocate Panelists: Eva Villalba, Executive Director, Quebec Cancer Coalition, VBHC Expert Dr. Craig Earle, Chief Executive Officer, Canadian Partnership Against Cancer Jennifer Carey, Manager of National Advocacy, Canadian Association of Medical Radiation Technologists Samar Saeed, Clinical Services Manager, Outpatient Oncology & Systemic Therapy, William Osler Health System |
| Improving Access to Advanced Diagnostics: Comprehensive Genomic Profiling as a Gateway to Personalized Treatment of Metastatic Cancer | Moderator: Dr. Jason Karamchandani, Associate Professor, Departments of Pathology, Neurology and Neurosurgery, McGill University; President, Canadian Association of Pathologists Patient: Cynthia Mitchell, Cholangiocarcinoma Patient; Patient Partner and Advocate Panelists: Eddy Nason, Director, Health, Conference Board of Canada Dr. Robert Grant, Medical Oncologist, Princess Margaret Cancer Centre, University Health Network Dr. Megan Mahoney, Director, Scientific Affairs and Training, BioCanRx Dr. Alan Spatz, Professor, Departments of Pathology & Oncology, McGill University; Chief, Department of Clinical Laboratory Medicine, MUHC; Medical Director, Optilab Montreal-MUHC network |
| Advancements in the Management of Lung Cancer | Moderator: Dr. Kevin Jao, Adjunct Professor, Université de Montréal; Hemato-oncologist, Hôpital du Sacré Coeur de Montréal; Co-Chair, Lung Cancer Canada Medical Advisory Committee Patient: Yuan Lew, Stage IVB Lung Cancer Survivor, EGFR Mutation; Patient Advocate Clinician Roundtable: Dr. Shaqil Kassam, Medical Oncologist, Stronach Regional Cancer Centre Dr. Elizabeth David, Vascular Interventional Radiologist, Sunnybrook Health Sciences Centre Dr. Stephanie Snow, Medical Oncologist, QEII Health Sciences Centre; Professor, Dalhousie University Dr. Marcelo Cypel, Surgical Director, Ajmera Transplant Centre, UHN; Surgical Director, UHN ECLS Program; Canada Research Chair, Lung Transplantation; Professor of Surgery, Division of Thoracic Surgery, University of Toronto, University Health Network; Senior-Scientist, Toronto General Research Institute Dr. Srinivas Raman, Radiation Oncologist, BC Cancer Vancouver; Clinical Assistant Professor, Department of Radiation Oncology, UBC |
| Harnessing the Immune System: Breakthroughs in Immunotherapy | Moderator: Cassandra Macaulay, Chief Research Officer, CCRAN Patient: Eric Hamilton, Stage IV Colorectal Cancer Patient; Patient Advocate Panelists: Dr. Mairi Lucas, Medical Oncologist, BC Cancer, Surrey; Assistant Clinical Professor, University of British Columbia (UBC) Dr. Anuradha Krishnamurthy, Assistant Professor of Oncology, Roswell Park Comprehensive Cancer Center |
| Day 2: Beyond The Diagnosis: Elevating Patient & Family Voices To Improve EAOC Outcomes Moderator: Cassandra Macaulay, Chief Research Officer, CCRAN | |
| Symposium Day 2 Opening | Cassandra Macaulay, Chief Research Officer, CCRAN |
| Welcome from CCRAN’s President | Filomena Servidio-Italiano, President & CEO, CCRAN Katie Hulan, Early Age Onset Stage IV ALK Positive Lung Cancer Patient; Lung Health Advocate |
| Reviewing CCRAN’s Pan-Tumour Patient Survey Findings: Are Early Age Onset Cancer Patient Needs Being Addressed? | Filomena Servidio-Italiano, President & CEO, CCRAN Cassandra Macaulay, Chief Research Officer, CCRAN Shalini Gambhir, Research Officer, CCRAN |
| Establishing Young Adult Cancer Clinics: A Patient Group Roundtable | Moderator: Dr. Perri Tutelman, Assistant Professor, Chair in Transdisciplinary Mental Health, Department of Psychology, University of Calgary; Co-led Canada’s AYA Cancer Priorities in partnership with AYA CAN Patient Group Roundtable: Filomena Servidio-Italiano, President & CEO, CCRAN Austin Zimmer, Support Services Manager & Research Coordinator, Prostate Cancer Foundation Canada Brenda Clayton, President & Founder, Cholangio-Hepatocellular Carcinoma Canada; Caregiver of Daughter who succumbed to Early Age Onset Cholangiocarcinoma Dani Taylor, Manager of Programs, Young Adult Cancer Canada; Stage III Colorectal Cancer (Lynch Positive) Survivor; Patient Advocate Maureen Elliott, Senior Manager, Programs and Support, Pancreatic Cancer Canada Teresa Tiano, Chair and Co-Founder, My Gut Feeling, Stomach Cancer Foundation of Canada; Stomach Cancer Survivor and a Nine-Time Cancer Survivor Bukun Adegbembo, Director of Operations, Canadian Breast Cancer Network Michele Wright, Manager, Patient Support Programs, Lung Cancer Canada |
| Exploring Intimacy, Reproduction, & Fertility in Early Age Onset Cancer Patients | Moderator: Christopher Mammoliti, National Patient Programs Manager & Young Adult Cancer Coach, CCRAN; EAOC Patient Expert; Thyroid Cancer Survivor & Late-Stage Colon Cancer Survivor Patient: Julia Girmenia, Stage IV Inflammatory Breast Cancer Patient; Patient Advocate Panelists: Dr. Lauren Walker, Director, Walker Psychological; Adjunct Associate Professor, University of Calgary Dr. Caitlin Dunne, Reproductive Endocrinologist, Fertility Specialist & Co-Director, Pacific Centre for Reproductive Medicine (PCRM) Dr. Trevor Cohen, Gynecologic Oncologist, Victoria Centre, BC Cancer Agency Liz Ellwood, Founder, Fertile Future; Founder, Le Strategies; Co-Founder, Fertility Match Canada; Stage IB2 Cervical Cancer Survivor; Patient Advocate |
| Managing the Cost of Cancer: Financial Navigation for Early Age Onset Cancer Patients | Moderator: Stephen Piazza, Director of Advocacy, Canadian Cancer Society Patient: Chantale Thurston, Board Chair, AYA Can—Canadian Cancer Advocacy; Stage IV Appendix Cancer Panelists: Meg Pfeifer, Psychosocial Oncology Clinician, CancerCare Manitoba Shannon Lee Simmons, Certified Financial Planner; Chartered Investment Manager; Founder, The New School of Finance Inc. Mary Stuart, Family Nurse Practitioner, AYA Pediatric Cancer Survivorship Program, IWK Health Centre, Halifax, Nova Scotia |
| Let’s Talk: Exploring the Cancer Experience Through the Lens of Individuals from Marginalized Populations | Moderator: Dr. Naheed Dosani, Palliative Care Physician, St. Michael’s Hospital; Founder & Lead, Palliative Education And Care for the Homeless (PEACH), Inner City Health Associates; Medical Director/Health Equity Lead, Kensington Health; Health Equity Advisor, CPAC; Assistant Professor, University of Toronto Patient Panelists: Harjeet Kaur, Stage IV Rare Blood Cancer Survivor; Patient Advocate; Speaker; Co-Founder, Chai and Hope J. Nadia Headley, Stage III Breast Cancer Survivor; Patient Advocate; Strategic Director, Twenty One Fourteen Consultancy Services; Executive Director, The Women’s Centre of Halton Kaylee Engle, Stage IV Melanoma Patient Peter Laneas, Testicular Cancer Survivor (Stage IIIA & IA); Advocate; Advocacy & Engagement Lead, Cancer Fatigue Services |
| Life Beyond Treatment: Improving the Survivorship Experience | Moderator: Dr. Mary Jane Esplen, Psycho-Oncologist; Professor, Department of Psychiatry, Temerty Faculty of Medicine, University of Toronto Patient: Robby Spring, Stage I Breast Cancer, Luminal B, Survivor; Patient Advocate Panelists: Dr. Margaret Fitch, Professor (Adjunct), Bloomberg Faculty of Nursing, University of Toronto Dr. Stuart Peacock, Professor and Leslie Diamond Chair in Cancer Survivorship, Simon Fraser University; Distinguished Scientist, BC Cancer Dr. Lianne Trachtenberg, Clinical and Health Psychologist, Lianne Trachtenberg Psychology |
| Closing remarks | Filomena Servidio-Italiano, President & CEO, CCRAN |
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Share and Cite
Raphael, M.J.; Brenner, D.R.; Chawla, T.; Matwiy, T.; Peacock, S.; Spring, R.; Tutelman, P.R.; Villalba, E.; Macaulay, C.; Servidio-Italiano, F. Optimizing Care Pathways from Screening/Detection to Survivorship for Early Age Onset Cancer Patients in Canada. Curr. Oncol. 2026, 33, 377. https://doi.org/10.3390/curroncol33070377
Raphael MJ, Brenner DR, Chawla T, Matwiy T, Peacock S, Spring R, Tutelman PR, Villalba E, Macaulay C, Servidio-Italiano F. Optimizing Care Pathways from Screening/Detection to Survivorship for Early Age Onset Cancer Patients in Canada. Current Oncology. 2026; 33(7):377. https://doi.org/10.3390/curroncol33070377
Chicago/Turabian StyleRaphael, Michael J., Darren R. Brenner, Tanya Chawla, Trudy Matwiy, Stuart Peacock, Robby Spring, Perri R. Tutelman, Eva Villalba, Cassandra Macaulay, and Filomena Servidio-Italiano. 2026. "Optimizing Care Pathways from Screening/Detection to Survivorship for Early Age Onset Cancer Patients in Canada" Current Oncology 33, no. 7: 377. https://doi.org/10.3390/curroncol33070377
APA StyleRaphael, M. J., Brenner, D. R., Chawla, T., Matwiy, T., Peacock, S., Spring, R., Tutelman, P. R., Villalba, E., Macaulay, C., & Servidio-Italiano, F. (2026). Optimizing Care Pathways from Screening/Detection to Survivorship for Early Age Onset Cancer Patients in Canada. Current Oncology, 33(7), 377. https://doi.org/10.3390/curroncol33070377

