On Sunday, November 13th the International Anal Neoplasia Society (IANS) hosted a panel of anal cancer thrivers, entitled Thrivers In Action. The panel focused on what people who have experienced anal cancer are currently doing to “pay it forward” for other patients and families. The panel was moderated by Justine Almada, Co-Founder and Executive Director of the HPV and Anal Cancer Foundation, who was a caregiver for her own mother with anal cancer and started the Foundation with her siblings in her memory.
Anal cancer thrivers deal with the long-term bowel, sexual, and dietary side effects of chemotherapy and radiation. Despite this, the thrivers on the panel found the energy and passion not only to overcome their own personal challenges relating to anal cancer, but to also take that extra step to make a difference in the lives of others. One man and three women diagnosed with and treated for anal cancer shared their stories. Each speaker also described the actions they are taking to help others with anal cancer, as well as what they think providers can do or encourage their patients to do to advocate for the cause. The thrivers described their efforts in medical institutions, online and in-person peer support groups, public spaces and forums advancing scientific research. These thrivers are extraordinary advocates for the HPV and anal cancer community.
It is crucial that providers help encourage more people who have experienced anal cancer to become involved: elevating the voices of the anal cancer community will advance more resources for both clinicians and patients. The recommendations from the panel on how to empower patients include: appointing anal cancer thrivers to institutional patient advisory boards; inviting thrivers to get involved in provider offices; encouraging thrivers to join a peer group, such as Blog for a Cure or the HPV and Anal Cancer Foundation’s Peer to Peer support program; informing thrivers that others are speaking in their communities about anal cancer public spaces; talking about the importance of vaccination for the young people in their lives; and actively telling patients that there is no shame in having anal cancer.
We hope providers will take these recommendations and look for opportunities to implement them. The HPV and Anal Cancer Foundation is always available as a resource to both providers and patients. Should providers need further ideas, want to refer patients to the organization’s network or want to connect with the thrivers who spoke on the panel, please visit www.analcancerfoundation.org or email firstname.lastname@example.org. Thank you to the thrivers and providers who are taking action to empower our community to end anal cancer.