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Giving Cancer Patients a Voice

By Anita Roark, MA

What if you could share your experience of being diagnosed with and treated for cancer–including the emotions you felt and how you coped–and that sharing could contribute to research that will improve the lives of others?

Well, you can, through a valuable online resource called the Cancer Experience Registry. As a cancer survivor who just recently learned about the project and became a participant, I would highly recommend it not only to other cancer patients, but their family members as well.

For many years, I’ve worked as a public relations professional in the cancer field at UCLA, Cedars-Sinai, the American Cancer Society, and now, part-time at Gilda’s Desert Cities. Friends, colleagues, and family members have been diagnosed with cancer, and sadly, my husband succumbed to it 12 years ago. But until this year, except for the occasional skin cancer, I myself was cancer-free.

Then out of the blue, my yearly mammogram showed something suspicious in my left breast, and within a month, my own cancer journey had officially begun. Thank God for early diagnosis, outstanding medical care, and association with Gilda’s program of emotional and educational support.

Gilda’s Desert Cities is an affiliate of the worldwide Cancer Support Community and benefits from its immense resources, including the Research and Training Institute and Cancer Experience Registry. It was by helping spread the word about the registry among Gilda’s members (they hear about it via orientations, support groups, flyers, e-newsletters, and the website, according to Clinical Director Gail C. Bardin, LMFT) that I myself became aware.

I’ve always thoroughly believed in participating in scientific studies that can increase understanding and improve outcomes for those who follow, so I decided to go online to www.cancersupportcommunity.org and try it out.

The principal research tool is an extensive, secure online survey. Before recommending it to others, I wanted to make sure it was well-designed and hassle-free. Happily, it was. And once you are registered, you can take as much time as needed, go backwards to change anything at any time, and even log off and resume at a later time or multiple times. I was impressed with the broad spectrum of the questions the researchers are asking, and can see how they will gain critical insights that enable them to reach their goal “to qualify and quantify the issues and challenges that are of the most concern.”

To date, more than 10,000 people have participated in the Cancer Experience Registry, and healthcare providers, researchers and oncology professionals are already making use of the early findings to develop specific tools and resources that cancer patients and their caregivers need. But there’s much more to be learned, and your experience can make a great contribution. I urge you to go to www.cancersupportcommunity.org. It’s right there on the home page. I’m sure that, like me, you’ll find the Cancer Experience Registry to be a valuable personal resource. And you’ll have the deep satisfaction of knowing you’ve made a real difference for others with cancer.

Anita Roark is a writer/editor and public relations professional whose career has been devoted to the cancer field. In 2016, she also became a cancer survivor. She is currently public relations/communications coordinator at Gilda’s Desert Cities, a professionally led, no-cost program of emotional and educational support for all those impacted by cancer serves more than 5,800 men, women, children and teens in the Coachella Valley. Contact Gilda’s at (760) 770.5678 or www.gildasclubdesertcities.org

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