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Five Reasons to Join the Cancer Experience Registry

Wednesday, August 9, 2017

The Cancer Support Community's Research and Training Institute provides a unique and explorative opportunity for people to share their personal experiences with cancer through The Cancer Experience Registry. The Registry collects stories and creates a collection of patient voices to exchange information and resources. It helps connect people touched by cancer, and it uses information from participants to learn more about what quality of life means to patients. By being a part of the Registry, all cancer patients—at any point of their cancer journey—and caregivers can contribute to the cancer community.

New Research Presented by CSC at ASCO 2017

Thursday, June 8, 2017

The Cancer Support Community was honored to return to ASCO and we did not come empty-handed. Armed with three abstracts and one poster presentation, CSC’s Research and Training Institute (RTI) team was ready to share our research with the oncology community. Through the Cancer Experience Registry®, the RTI has collected data from over 11,000 cancer patients and caregivers—with every type of cancer represented.

Meeting the needs of caregivers (and patients) affected by lung cancer

Wednesday, January 4, 2017

Caregivers play a critical role in the treatment, support, and recovery of individuals with cancer, yet often times, their emotional and informational needs get overlooked. Caregivers have such a meaningful role in cancer care, and it is important to recognize and address their needs. These needs vary based on the health of the care-recipient, the physical and emotion needs of the recipient, the resources of and the demands on the caregiver, as well as the family or relationship dynamics.

Make Our Lung Cancer Community More Visible - Share Your Experience

Wednesday, November 30, 2016

Calling all lung cancer patients/survivors and care partners! The science is finally moving faster, providing more treatment options and hope for the future. Now we also need to help shape what the future looks like in other ways. Here in Lung Cancer Awareness Month, please take a few minutes to register for the Cancer Experience Registry and fill out the questionnaire.

Cancer and Aging: The Connection Between Two Life-Changing Events

Wednesday, June 15, 2016

This week's blog post is an excerpt from last month's Cancer Experience Registry newsletter. This excerpt is from an interview with Jimmie Holland, MD, Wayne E. Chapmen Chair of Psychiatric Oncology at Memorial Sloan Kettering Cancer Center, and Dayle Friedman, Rabbi, Spiritual Consultant and Trainer at Growing Older: Wisdom + Spirit Beyond Midlife. This newsletter focused on the topic of cancer and aging.

Hope: What Motivates Us to Go Forward

Wednesday, May 11, 2016

"By definition," Lillie Shockney says, "hope is something in the future, something that motivates us to go forward in some manner. When someone is facing cancer, it's important from the outset to learn what that person's life goals and hopes are and to think about whether these hopes can be fulfilled. Are they realistic? Sometimes, you have to step back and take a different path."

Working to Understand the Full Impact of Stomach Cancer

Thursday, February 4, 2016

The Advisory Board grew silent as one of the caregivers told his story. It was the first meeting of the group the Cancer Support Community brought together to plan the new Stomach Cancer program for the Cancer Experience Registry.

He was young, nice looking, straight forward--but the pain and futility of his beautiful wife’s illness and death from stomach cancer was clear as he spoke. The doctors in the group listened and stressed the urgent need for new therapies to improve the prognosis, but we all came away from that meeting with a deeply increased understanding of the importance of connecting to the community of people impacted by stomach cancer (also known as gastric cancer) -- and giving them a voice.

Giving Back By Sharing Your Voice Through the Cancer Experience Registry

Thursday, July 11, 2013

If sharing your cancer journey could enhance the lives of others, would you help?

I keep hearing that people who have been diagnosed with cancer want to give back. They want to “pay it forward” so that the next person who is diagnosed with their disease will have a better experience than they had. I always think to myself – how selfless! We want to give back to you, too.

There seems to be so much survey research these days. An organization asks you to answer a questionnaire and then you never hear about it again. We wanted the Cancer Experience Registry to be so much more than a survey, so we created something we call Explore Responses where you can do just that – explore the responses of other people who have been diagnosed with cancer.