On June 1, we partnered with Bayer HealthCare and other patient advocacy groups to host a virtual Summit for a group of influential prostate cancer bloggers. The event featured open conversation guided by short presentations from leaders in the prostate cancer community, including our own director of patient education, Ivy Ahmed, John Lupton from Prostate Cancer Speaks, and Ariadna Holynskyj from Bayer U.S. Oncology medical affairs. Rose Talarico and Gissoo DeCotiis from Bayer were also on hand to moderate the discussion.
At ZERO, supporting men who live with prostate cancer is at the heart of everything we do, and we know a key piece of this support is conversation – especially the type that connects patients with the resources and treatment options they seek.
The conversation during the Summit focused on eye-opening results from the U.S. arm of the global Prostate Cancer Symptoms Survey, which ZERO helped to commission alongside Bayer and our fellow International Prostate Cancer Coalition groups: CancerCare, Prostate Cancer Research Institute (PCRI), Patient Advocates for Advanced Cancer Treatments (PAACT), Prostate Health Education Network (PHEN), Us TOO International, GEPAC and Europa Uomo. The Harris Poll survey of 505 advanced prostate cancer patients and caregivers was conducted earlier this year from February 12-April 13, with the goal of understanding the experiences of those affected by the disease and its symptoms.
The survey explored whether men recognize the pain and discomfort that may signal a change in their prostate cancer, how those symptoms may impact their daily lives, and whether they speak up to their doctors about their symptoms. During the Summit, we shared an in-depth look at the results with bloggers from across the United States who represent the prostate cancer community online. We then discussed with one another what these results mean for the community at large and what opportunities they present to help bring about a nationwide conversation on advancing prostate cancer.
Many of the bloggers who joined us at the Summit regularly and openly discuss the physical and emotional journey that comes with prostate cancer, and chronicle what a day in the life of someone living with prostate cancer looks like. It is interesting to think about how some of the conversations they are comfortable having online as bloggers don’t necessarily translate for other men during their doctor visits. Surprisingly, the survey revealed that while 97 percent of men say they are comfortable talking to their doctors about their symptoms, the reality is when they enter the doctor’s office, less than half reported that they actually do speak up about how they feel.
Although conversations like these are important, we understand they aren’t always easy. As an extension of the survey, we worked with Bayer to develop the Men Who Speak Up educational program, a nationwide movement that spotlights the critical importance of men speaking up and taking action on their symptoms.
During the Summit, we provided the bloggers with an overview of the program which offers a doctor discussion guide, symptoms tracker and other tools that can guide conversations and help men and their loved ones make the most of their next doctor visit.
We’d like to extend our thanks to Bayer, the IPCC and the bloggers who attended our Summit for their time and for helping to raise awareness for the need to speak up about the signs and symptoms of advancing prostate cancer.
About ZERO — The End of Prostate Cancer
ZERO — The End of Prostate Cancer is the leading national nonprofit with the mission to end prostate cancer. ZERO advances research, improves the lives of men and families, and inspires action. We’re building Generation ZERO, the first generation of men free from prostate cancer, through our national run/walk series, education and patient support programs, and grassroots advocacy. ZERO is a 501(c)(3) philanthropic organization recognized with four out of four stars by Charity Navigator, accredited by the Better Business Bureau, with regional chapters across the country. We dedicate 85 cents of every dollar to research and programs. For more information, visit www.zerocancer.org.