Research and Clinical Trials in Canada

Dr. Filipa Lynce from Harvard Medical School highlighted the ongoing challenges in accurately diagnosing IBC. Given that IBC often lacks a distinct lump and progresses rapidly, diagnosis heavily depends on the experience of the clinician. In Canada, this underscores the urgent need for heightened awareness and education among our healthcare providers. We must advocate for more robust training programs that equip physicians with the skills to recognize IBC’s unique presentation and symptoms, particularly in primary care settings.

Dr. Frederick M. Howard from the University of Chicago discussed the genomic complexity of IBC, noting that while there are no unique genomic markers that distinguish IBC from other breast cancers, certain pathways like NOTCH and RAS/RAF are more frequently mutated. For Canada, this indicates a critical need to invest in genomic research specific to IBC. By understanding these pathways better, we can work towards developing targeted therapies that could improve survival rates for Canadian patients.

Dr. Anthony Lucci from MD Anderson Cancer Center (MDACC) raised concerns about the de-escalation of treatment in IBC, particularly regarding surgical approaches. He emphasized the importance of prioritizing clear disease margins in surgical plans and involving plastic surgeons early to optimize reconstruction efforts. Notably, Lucci suggested that radical mastectomy could benefit patients with metastatic IBC, citing studies where mastectomies significantly improved overall survival—a stark contrast from metastatic non-IBC cases where surgery is rarely recommended. In Canada, where access to comprehensive cancer care can vary by region, it is vital that we establish and adhere to national standards of care for IBC. These standards should emphasize the importance of trimodal therapy—neoadjuvant chemotherapy, modified radical mastectomy, and post-mastectomy radiation therapy—ensuring that all Canadian patients receive the best possible care regardless of their location.

The symposium highlighted the lack of standardized protocols for IBC treatment and the discrepancies in care even at leading institutions like MDACC. In Canada, developing national IBC protocols is essential. These protocols should be disseminated widely among oncology networks and healthcare institutions to ensure consistency in treatment and improve patient outcomes.

“We hear a lot of ‘we don’t know’ or ‘we don’t have,’ but hope lives in this research, and I’m not discouraged by that,” said Terry Arnold, founder of the IBC Network Foundation. Arnold further stressed that as new information becomes available, it needs to be effectively communicated. “We need to expand that knowledge base to other medical expertise … not only medically, but also into the community, so we can have the tools to be good advocates for ourselves,” she said. Her comments highlight the necessity of ensuring that patients and advocates are well-informed and equipped to make decisions about their care. Canadian clinicians must be trained not only to recognize IBC but also to empower patients to advocate for themselves. This is particularly crucial in our healthcare system, where patients often face long wait times and barriers to specialist care.

The need for IBC-specific clinical trials and research was repeatedly emphasized. In Canada, we must lobby for increased funding and support from government agencies, including the Department of Defense, to drive IBC research forward. This includes advocating for Canadian participation in international trials and ensuring that our patients have access to the latest treatments and innovations. Naomi John, vice chair of the IBC Network UK, stressed the role of advocacy in bridging the gaps, stating, “Until we have a global protocol in place that is universally accepted … that’s where our advocacy comes in: to make sure that [patients] can receive the best possible care.”