Patient Representative: Joan Petrie

Supporting the IND and the CCTG Correlative Sciences Tumour Biology Executive Committees

Resides in London, Ontario | A CCTG Patient Representative since 2011

"Rare cancers are frequently addressed by CCTG through cooperative research groups, umbrella or basket trials - a unique opportunity benefiting Canadians. Current oncology research and personalized medicine is making it possible to match the study treatment to the specific tumour type. CCTG is leading the way with research, leveraging the opportunity to revise current standard of care treatments."

Joan is the caregiver for her husband who was diagnosed with sporadic medullary thyroid cancer in 2004. Medullary thyroid cancer, both familial and sporadic, is a rare cancer, comprising approximately 5% of thyroid cancer diagnoses. In the summer of 2021, he was also diagnosed with breast cancer, a rare malignancy for males with limited data on treatments and outcomes for male breast cancer. Genetic testing provided an impetus for family based genetic counseling.

The multiple diagnoses, interventions were stressful and anxiety provoking for their whole family because there are few guidelines for male breast cancer. There are guidelines for MTC. The occurrence of two rare cancers is beyond comprehension.

Joan is a social worker and college instructor who turned her family's experience into advocacy bringing the patient experience to a number of volunteer roles as a community representative on the Western University Health Sciences Research Ethics Board, and previously, the Ontario Cancer Research Ethics Board (OCREB).

As a member of the CCTG Correlative Sciences Tumour Biology executive committee and currently, the Investigational New Drugs executive committee, she also supports the CAPTUR/PM.1 Trial Committee. Joan believes that the patient voice on CCTG committees brings the patient and family experience by supporting trials, offering insights based on their own interaction with oncology, ensuring quality of life, supportive care, patient reported outcomes are part of clinical trials. She is a fervent advocate of clinical trials and cancer research. The shorter course of radiation, the use of Tamoxifen for her husband are all possible because others participated in clinical trials that changed treatment and practice.

"Participating in a clinical trial is an opportunity to access innovative agents and methodologies, particularly combinations of treatment approaches – surgical, medical oncology, radiation. While everyone volunteering to be part of a clinical trial hopes for a personal response for their disease, they also participate for the greater good – to help others in the quest for a better treatment path."