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 new 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 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 U.S. and worldwide investments in clinical cancer research, millions of people are surviving cancer and living healthy, productive lives.
To tell the story of 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.
In addition to the interactive timeline, CancerProgress.Net features video interviews
with oncologists that help bring the story of cancer research progress alive. The video section was expanded recently to feature the voices of patients and advocates like Lori who can speak personally to the value of cancer research and the impact it has had in their lives. Lori agreed to be interviewed for CancerProgress.Net to talk about her participation in clinical trials.
Clinical Trials: “Paying It Forward”
The first few clinical trials Lori participated in did not work for her, but she and her husband searched 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 actually 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 that 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 pay it forward, that’s what it is. It’s paying it forward.”
“Without clinical trials, we’d have no progress,” said Dr. Brose. “So essentially, clinical trials are the process where we take what we’ve learned in the lab and apply it to the patients to find out if we can really improve things. And clinical trials are how we do that. If we didn’t do clinical trials, we would never know whether some of the things we were discovering are going to work or not and develop new therapies. So nothing would actually get done and the patients would have no hope.”
Linked References and Downloadable Resources
To help users delve even more deeply into the significant progress made in recent decades, this past summer 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, or 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 includes additional perspective on remaining challenges as outlined in ASCO’s research blueprint, “Accelerating Progress Against Cancer: ASCO's Blueprint for Transforming Clinical and Translational Cancer Research
,” that lays out ASCO's prescription for transforming the nation's research system to deliver more effective and personalized cancer therapies, faster.
Visitors to the site can download slides and written materials, and can use a data visualizer to look at cancer statistics.
The launch of CancerProgress.Net in 2011 marked the 40th anniversary of the National Cancer Act of 1971, which led to major new U.S. investments in cancer research.
Executive editors of the site are Howard Sandler, MD, of Cedars-Sinai Medical Center; Richard L. Schilsky, MD, of the University of Chicago; and Robert Sticca, MD, of the University of North Dakota School of Medicine and Health Sciences.
—by Danielle Blake and Kirsten Goldberg, ASCO Corporate Communications