Today’s blog post is written by Marni Amsellem, PhD. Marni is a research consultant for the Cancer Support Community.
Today is National Cancer Survivors Day. Cancer survivorship is often thought to begin on the day of diagnosis. While the term “survivor” can have different meanings—one thing is clear—the social and emotional needs of people who have ever had cancer are vast. Whether you’re newly diagnosed, in treatment, facing a recurrence or considered cured, cancer survivors have distinct needs, and these needs can change over time.
A huge part of what we do at the Cancer Support Community is help address the social and emotional needs of anyone who has ever received a cancer diagnosis. This is done in a number of ways, including our Frankly Speaking About Cancer workshops. These workshops are offered through our Affiliate Network and program partners. After each workshop, people fill out a short survey. Through these surveys, we learn more about the information and support needs of people affected by cancer.
Last year, 35.1% of workshop participants were diagnosed with cancer within the past year. Both the emotional and informational needs may be very high during this time. For example, women with metastatic breast cancer reported they attended a workshop focused on their diagnosis because they wanted to:
- Learn about their diagnosis (85.3%)
- Better cope with a cancer diagnosis (65.6%)
- Learn more about treatment options (63.3%)
- Get answers to specific questions (37.1%)
We also recognize that many people, even years after a cancer diagnosis, have questions, concerns or want to connect with others. Which is why 23.4% of workshop attendees were diagnosed five or more years ago. An important reason why these individuals came to a workshop was to connect with others who were going through similar issues.
Recognizing that people have different needs at different points, CSC created the Cancer Experience Registry. The Registry is an online, grassroots community where people can share their social and emotional experiences with cancer. It is a research project driven by anyone who has ever received a cancer diagnosis and their caregivers.
Our hope is through the sharing of these experiences, we can use this information to create new programs and resources for people touched by cancer, but also bring forward a collective patient and caregiver voice to health care providers, policymakers and others to help improve the cancer experience.