Inspire Change by Sharing Your Cancer Experience
Paul, a 3-time cancer survivor, believes in paying it forward. He has been volunteering at Food Bank of the Rockies in Colorado for more than 2 decades. For Paul, it’s an active and tangible way to give back. “People have done lots for me over the years. There’s always been a support system there for me when I needed it,” he says. “Giving your time ― that’s irreplaceable.”
As a cancer survivor, Paul has given back to others in another powerful way. He participated in our Cancer Experience Registry to share valuable insights about his cancer journey. The Registry is a confidential online survey for anyone who has ever been diagnosed with cancer. It’s also for cancer caregivers. The insights of our survey participants help us create better outcomes for patients and caregivers today and for future generations.
Learn about the Registry's impact by hearing directly from 3 of our survey participants.
Paul was diagnosed with prostate cancer in 2007. Ten years later, he experienced a recurrence. “After the return of the prostate cancer, we noticed a lesion on my right kidney,” he says. “And that ended up being cancerous.”
Paul had a partial nephrectomy, a surgery to remove part of the kidney. He also received radiation treatment for his prostate cancer. “We won’t know for up to a year if we got it all, but at a minimum, I feel like we gave it a bad sunburn,” he says with a smile.
One of the things Paul appreciates about the Registry is how participants’ insights contribute to the cancer community in different ways. The results are used by health care workers, researchers, and policymakers to inspire change. He also appreciates that the surveys explore cancer concerns beyond clinical data. “They broaden the experience, and they get to the emotional, mental, and spiritual aspects of dealing with cancer,” Paul explains, “which is immensely helpful for those who are fighting the fight.”
The Cancer Experience Registry’s findings help improve the cancer care journey.
Nikki, a wife and a mother of 2 children, learned about the Cancer Experience Registry after spending hours researching ways she could give back to the cancer community. Her own experience with cancer began when she discovered a lump in her right armpit. After having a mammogram, she learned it was stage 1 invasive ductal carcinoma.
“It was very aggressive, and we needed to move quickly,” says Nikki, whose cancer was hormone positive (ER/PR+). She also carries a genetic mutation called ATM. As a result, she says, “We knew that the best course of action would be a bilateral mastectomy.”
Now in remission, Nikki was able to share her experience and contribute to our cancer research by participating in the Registry. “The word experience is key here,” she says. “This cancer registry is the whole experience, from being a pre-vivor and knowing that you may have a potential mutation, all the way to the financial implications, to surviving in remission. It’s the entire experience all wrapped into one.”
Nikki also found the Registry’s platform easy to use. “You can use your smartphone, tablet, [or] computer to log on to their website,” she says. “It feels safe, it feels authentic, and I feel that they are using my story for the greater good.”
The Registry focuses on the full emotional, psychological, and financial journey.
Before Lynn was diagnosed with cancer, she spent 10 years as a caregiver to her parents. Then, a few days after her father passed away, her brother was diagnosed with thyroid cancer. Lynn learned she had the same thyroid cancer about 10 months later. Now, like Paul and Nikki, she looks for ways to give back to others. “A question that I ask myself every day is how could I help somebody else,” she says.
Sharing her cancer experience as a participant in the Registry helped her a lot, says Lynn. “It’s not only I who goes through this,” she explains. “There are other people. Going into [the] Registry, I feel very safe. I open up.”
In addition to giving back, Lynn finds joy through her longtime passion for photography. “Even though we have cancer, we can enjoy our life,” she says.
The Registry takes less than an hour to complete.
The success of the Cancer Experience Registry wouldn’t be possible without our participants. By taking the survey, you join thousands of others in helping to:
- Enhance cancer care
- Improve support services
- Influence health care policies
Your insights can change the future of cancer support. Your cancer experience can inspire change. Learn more about our Registry and how you can participate.