Feb 26, 2013
By Danielle Blake and Kirsten Goldberg, ASCO Corporate Communications
Lori Cuffari was having an ordinary workday in the spring of 2008 when she put her hand on her neck while talking on the phone. "All of a sudden I felt a big lump," said Lori in a video on ASCO's CancerProgress.Net website. "I went to the doctor that afternoon and said, 'What is this? I've got a giant lump in my neck.'" Soon after that visit, Lori learned she had a rare form of thyroid cancer—Hurthle cell thyroid cancer.
Following multiple surgeries to remove her thyroid and having exhausted standard treatments for thyroid cancer, the disease had spread to Lori's lungs. She was told her options moving forward were limited. That's when Lori and her husband were introduced to clinical trials.
"I said 'okay' to my first clinical trial because at the time, there wasn't any other option," she said. As a result of clinical trials testing related to new therapies for her cancer, Lori has been able to go back to work and live without symptoms.
Since ASCO's founding nearly 50 years ago by physicians who were daring to try to extend the lives of people with cancer and who wanted to share ideas and results, the Society has advocated for increased federal funding for clinical trials. Thanks to worldwide investments in clinical cancer research, millions of people are surviving cancer and living healthy, productive lives.
To tell the story of this progress against cancer, ASCO launched CancerProgress. Net in 2011. The site is intended as a resource for media, policymakers, oncologists, advocates, and the public. The central feature of the site is an interactive timeline of major milestones in cancer treatment, prevention, and detection, covering 17 different cancer types. The site was developed under the guidance of an ASCO editorial board of expert oncologists.
Clinical trials: "Paying it forward"
In addition to the interactive timeline, CancerProgress.Net features video interviews (cancerprogress.net/stories) with oncologists that help bring the story of cancer research progress to life. This video section was expanded recently to feature the voices of patients and advocates such as Lori who can speak personally to the value of cancer research and the impact it has had on their lives.
|On CancerProgress.Net, an interactive
timeline outlines major milestones in cancer
treatment, prevention, and detection for
17 different cancer types.
According to Lori, the first few clinical trials she participated in did not work for her. However, she and her husband persisted in searching online for other trials. That's when they found Marcia S. Brose, MD, PhD—Assistant Professor of Otorhinolaryngology at the University of Pennsylvania Abramson Cancer Center, and a member of ASCO's Cancer Communications Committee—who was conducting a clinical trial specifically for patients with Hurthle cell thyroid cancer.
"The clinical trial Lori has been a part of at the University of Pennsylvania has been therapeutic for her," said Dr. Brose. "She's gotten a tremendous benefit clinically and has been able to go back to work full-time, have a wonderful time with her family, go on vacations, and be symptom-free for a prolonged period, which she was otherwise not going to have. In fact, I'm not even sure she would've been here today."
"Any patient who is considering a clinical trial has to know that whatever they're doing is making a difference—even if it's to find out that this drug isn't working," Lori said. "It's an advancement. It pushes it forward. It's 'paying it forward.'"
"Without clinical trials, we'd have no progress," said Dr. Brose. "We would never know whether some of the things we are discovering are going to work. So nothing would actually get done, and the patients would have no hope."
Linked references and downloadable resources
To help users delve more deeply into the significant progress made in recent decades, the CancerProgress.Net Editorial Board reviewed hundreds of journal articles and added links to the primary research articles that led to the advances chronicled on the website. These linked references are a useful resource for oncology fellows, training directors, advocates of patients with cancer, science writers, and anyone interested in following the history of progress against specific cancer types.
In November 2012, three new cancer timelines were added to the site—liver, stomach, and head and neck cancer—bringing the total number of cancer types chronicled on the site to 17. The new timelines were curated by CancerProgress.Net specialty editors Ghassan K. Abou-Alfa, MD, of Memorial Sloan-Kettering Cancer Center (liver); David H. Ilson, MD, PhD, of Memorial Sloan-Kettering (stomach); and Everett E. Vokes, MD, of the University of Chicago (head and neck).
The site also includes additional perspectives on remaining challenges as outlined in ASCO's research blueprint, Accelerating Progress against Cancer: ASCO's Blueprint for Transforming Clinical and Translational Cancer Research.
Visitors to CancerProgress.Net can download slides and written materials and can use a data visualizer to look at cancer statistics.
Executive editors of CancerProgress.Net are Howard Sandler, MD, of Cedars-Sinai Medical Center; ASCO CMO Richard L. Schilsky, MD; and Robert Sticca, MD, of the University of North Dakota School of Medicine and Health Sciences.