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by Joanne Buzaglo   |   March 13, 2017

Your Experience Makes a Difference: The Cancer Experience Registry

If you sit down and talk to one man about his experience with prostate cancer, you’ll hear about many things – the challenges of choosing a treatment option for early stage disease, the potentially life-changing side effects, the impact on the people who love him, the uncertainty of living with advanced disease. Every man’s story will be unique, and powerful in its own way, and there is something important to be learned from every story.

Individual experiences do have an impact, but what happens when you bring those stories together as a collective voice – when many men choose to share their experiences? The Cancer Support Community’s Cancer Experience Registry provides men and their caregivers with the opportunity to identify the issues they face as they go through treatment for prostate cancer.

That information makes a difference. It means patients will know that other people understand what they are going through, that they are not alone. Doctors and health care providers can use patient reported data to improve the care they deliver. Policy makers can bring the patient experience to decisions about how best to deliver care. Organizations can develop better programs and services.

The Cancer Experience Registry began in 2013 ago and has grown steadily. Today, nearly 11,000 people with all types of cancer have enrolled in the Registry and taken the time to fill out the questionnaire about their cancer experience. We realized shortly after we started the Registry that while people facing cancer share many experiences, each cancer type has its own special issues. For that reason, we have added 11 programs for people with specific types of cancer, including prostate cancer. There is also a Registry for caregivers, who have their own issues and concerns.

Since we launched the Prostate Cancer Registry in 2015, about 300 men have joined and we have learned a great deal. Our key findings include:

  • Top concerns among prostate cancer patients were intimacy and sexual function (55% reported moderately to very seriously concerned), eating and nutrition (48%), and exercise (43%).
  • Almost 50% of prostate cancer patients wish they received more help with managing their long term side effects and symptoms.
  • A third of prostate cancer patients wish they received more help understanding their diagnosis.

There really is strength in numbers. Today, medicine increasingly depends on having good evidence, solid data, to support treatment and care decisions. Every man with prostate cancer who joins the Registry adds his voice to the effort and ensures that his experience makes a difference for people facing this disease, today and tomorrow. The Registry is also a community that lets men learn from other men and provides updates and information on advances in caring for prostate cancer.

To join the Cancer Experience, go to www.cancerexperienceregistry.org/join/zerosummit. You can check out the site and when you’re ready – fill out the questionnaire. When it comes to prostate cancer, men and the people who love them know that silence is not a virtue. Make your voice heard. Join the Cancer Experience Registry.