June is National Cancer Survivors Month, a time to celebrate survivors and recognize their unique hardships during and after battling the disease. The Cancer Center at Illinois (CCIL) appreciates a survivor’s journey and the value these perspectives give researchers. To ensure that these viewpoints are central to CCIL research projects, Erik Nelson and Zeynep Madak-Erdogan formed the Cancer Research Advocacy Group (CRAG) in 2015. CRAG is a group of cancer survivors who share their insights with researchers to inform patient-centric research efforts.

“Historically, Western medicine has taken an approach for cancer treatment where the goal is to get rid of the tumor at all costs,” according to Nelson. “It’s increasingly apparent that, as we have more survivors from that approach, there are long-lasting side effects and quality of life issues.”

Left to right: Erik Nelson and Catherine Applegate

CRAG includes more than a dozen survivors, caregivers, clinicians, patient advocates, researchers, and more. Group discussions have helped shape Nelson’s research, including exploring new therapies that can selectively kill cancer cells while minimizing side effects and addressing recurrence concerns.

“Those concerns have shifted our line of work to focusing on metastatic disease rather than frontline therapies,” explained Nelson. “How do we prevent it from coming back, and if it does, how can we treat it? Treating metastatic disease is very problematic in the clinic, and we don’t have effective therapies, especially for breast and ovarian cancers.”

Catherine Applegate, a four-time cancer survivor and cancer researcher, is one of the CRAG members lending her perspective. She began her career studying diet as an adjuvant therapy, but her experience with the disease led to a concentration on dietary and pharmaceutical interventions to detect and treat cancer.

“Cancer is a very individualistic disease. Each treatment scenario is so incredibly unique, so that’s why it’s so important for researchers and patients to talk.”

Catherine Applegate

“As a researcher, I’ve read about chemotherapy and other therapies. However, experiencing it myself, I was very much aware of the current limitations that we have surrounding cancer treatment. We’re working on developing better options, and I wanted to be more involved with that,” she said. “Cancer is a very individualistic disease. Each treatment scenario is so incredibly unique, so that’s why it’s so important for researchers and patients to talk.”

Applegate and Nelson hope the group continues to grow and maintain its diversity.

“The key is to have different perspectives because all those voices filter in and help inform researchers as to how we can help remove the biggest barriers,” said Nelson. “Survivors who have experienced different types of tumors provide unique perspectives while demonstrating an underlying theme that they all face similar hurdles once they’re diagnosed.”

Applegate leaves survivors – including anyone currently going through treatment – with a note of encouragement as they navigate their health journey.

“I struggled with a cancer recurrence issue and had to speak up for myself to get treatment. As patients, we need to do that or have someone with us at appointments who can. It’s important to be involved and advocate for yourself.”

If you’re interested in learning more or joining the Cancer Research Advocacy Group, you can click here.

Editor’s Notes:

Story written by Jessica Clegg, CCIL Communications
Video by Jessica Clegg and Jakob Stutz