Reflections on the Previvor Webinar
Understanding Community Perspectives.
Following our recent webinars exploring whether previvors should be included within the Breast Cancer Paddler (BCP) category—and whether this topic should be brought forward for discussion at the next IBCPC Congress—we have been deeply moved by the thoughtful, candid, and generous feedback shared by our national representatives, regional coordinators and the wider community of breast cancer paddlers. Many shared this information with their teams and returned with insights that have enriched our understanding.
For many teams, this topic had not been widely discussed before. Yet the conversations it prompted were meaningful and revealing. From the responses received to date, the sentiment appears to sit at > 90% against, <10% in favour for the inclusion of previvors in the BCP category.
What stood out most was not only the direction of the feedback, but the overwhelming appreciation expressed for the transparent and respectful way this dialogue was facilitated by Dr Tracy Sexton, Chair of the IBCPC Medical Advisory Panel. Tracy is a Radiation oncologist and has a PHD in genetics. Many participants emphasised how valued they felt being included in the process by IBCPC, noting the importance of open communication, clarity, and fairness when engaging with a topic that is both complex and deeply personal.
To support these discussions, we provided a summary of the working definition of previvor—originally prepared for the IBCPC Board earlier this year. This document helped ensure conversations were grounded in a shared understanding. The webinars also included a medical definition of a cancer patient, provided by Dr. Matilde Yahni of the IBCPC Medical Advisory Panel, who reminded us that a cancer patient is someone diagnosed with cancer and currently undergoing or having undergone treatments such as surgery, chemotherapy, radiation, or immunotherapy. This definition underscores the lived experience that has historically defined the BCP category.
Feedback from regional and national representatives further reinforced this distinction. One representative reflected on the emotional weight of the issue, expressing concern about revisiting a discussion previously addressed at the 2010 and 2014 Congresses. They noted that their 200‑member club is composed entirely of individuals diagnosed with breast cancer and felt that the term supporters remain more appropriate for those who have not received a breast cancer diagnosis.
A North American team reported that, after formally discussing the matter, their vote resulted in 20 against and 2 in favour of bringing the issue back to Congress. They expressed pride in IBCPC’s transparency and in the careful, respectful way the organisation has managed a topic that resonates so deeply for many.
Additional feedback highlighted the importance of beginning every related webinar with a clear explanation of purpose and context—particularly given the ongoing challenge of establishing a universally accepted definition of previvor. Participants felt this clarity would significantly elevate future discussions.
During the webinar and in the feedback received there was a common thread that there was a difficulty in defining previvor and the ongoing challenge of establishing a universally accepted definition. This became particularly relevant as Tracy reflected on how much the field of genetic testing has evolved over her 20‑year involvement, noting how rapidly the complexity of genetics continues to grow.
In summary, while there is respect for the importance of the topic and appreciation for the space to explore it, there is not dedicated support at this time for including previvors in the BCP category nor for advancing this topic to Congress. What is strongly supported, however, is our shared commitment to open dialogue, transparency, and compassion as we continue navigating this meaningful conversation together.
