After her oncologist told her he had nothing left to treat her rare thyroid cancer, Judy Roberts understandably lost hope.
“When they tell you that they’ve done all they can do, it’s shocking to hear,” she told The Greenville News. “Everybody seemed to have given up on me.”
Roberts is among the patients who have a rare cancer — one that afflicts between 150 and 5,000 patients a year. And treatment options are usually limited.
Greenville Health System hopes to change that by establishing a Rare Tumor Center at its Cancer Institute with a $1 million gift from a former chairman of the board of trustees.
“Patients with rare cancers are at a tremendous disadvantage,” said Dr. W. Jeffery Edenfield, medical director for GHS’ Institute for Translational Oncology Research.
“Clinical trials aren’t routinely available for these types of cancer, and the treatments are often based on observational use of medications which are less reliable than evidence-based approach,” he said. “I firmly believe that this newly defined approach will help those patients who need innovation.”
The center, announced Tuesday, is a partnership between GHS, Foundation Medicine, a Massachusetts company that specializes in molecular profiling, a process that provides information about each cancer’s genetic signature, and Selah Genomics, which operates the Selah Clinical Genomics Center at ITOR.
“Bringing those resources together with what we have in the Cancer Center is very exciting,” said Jerry Dempsey, the former board chair who, along with his wife, Harriett, provided the funding that made the center possible.
“Harriett and I were very interested in supporting it,” he said. “And we hope it will attract other financial support and other scientists to Greenville.”
At the new center, which will be dedicated to the treatment and research of rare cancers, each patient evaluation will include a sophisticated molecular analysis to help guide the therapy, said Edenfield, who is the center’s architect.
GHS has clinical trials for common malignancies like breast cancer and colon cancer. But with a focus on rare cancers, he said, the center should offer some optimism to patients and physicians alike.
“I take care of a number of patients with rare cancers and it’s frustrating, because you want to help as a physician, but you can’t find any help,” Edenfield told The News.
“It’s frustrating to look at a family and say you have no idea what to do,” he said. “Now, some don’t get any treatment at all. No one knows what to give them. Nobody’s paying attention to these people.”
Roberts, of Commerce, Ga., first learned she had thyroid cancer after a mammogram turned up something in her breast and she was sent to a surgeon, who also found a lump in her neck. Her breast was fine, but the lump in her neck turned out to be cancer.
About 1.6 million people were diagnosed with cancer in 2012, according to the American Cancer Society. Last year, about 60,220 people were diagnosed with thyroid cancer — 45,310 women and 14,910 men, the society reports.
And Roberts had a rare type of thyroid tumor — Hurthle cell cancer — which afflicts just 3,000 to 4,000 people each year, Edenfield said.
Surgery was performed in January 2010 to remove Roberts’ thyroid gland and the cancer, she said. It was followed by two radioactive iodine treatments.
About a year later, she learned the cancer had spread to her lungs and brain, which led to radiation treatments. And then the pronouncement that there were no more therapies left.
“They told me there’s no known cure for it,” said Roberts, 53. “And the doctors released me on as as-needed basis. If I need them, I should call them.”
Last May, she was referred to the GHS Cancer Institute, where she is seeing Edenfield.
There are no standard chemotherapy options for this type of cancer once the disease is advanced, he said. But a molecular analysis suggested that Roberts might benefit from Afinitor, a medicine that blocks the activity of a protein which regulates cell growth. And she has been stable for the past three months taking that drug, he said.
Although rare tumors are by definition uncommon, there are more than 100 different kinds of tumors that fall into this category, and together, they add up to about 20 percent of all cancers, Edenfield said.
And because they are so rare, he said, there are so few patients that it’s difficult to conduct clinical trials, making progress elusive.
“There’s no way to do a clinical trial, randomizing two different treatments, for something that’s incredibly rare,” he said.
“So if we can’t standardize the treatment, let’s standardize how we evaluate these patients. The explosion in molecular medicine ... makes that possible. And maybe we can find a treatment that’s already out there, or a clinical trial.”
At the new center, which is expected to see more than 100 patients in its first year, patients will undergo a standardized diagnostic evaluation supplemented by support services and access to other treatments such as surgery and radiation.
And some patients will be enrolled in a study using genomic testing that officials hope will lead to treatments. That test, provided by Foundation Medicine, uses next-generation sequencing to look for alterations in more than 230 genes that are believed to be linked to the growth and spread of cancer.
Kevin Krenitsy, chief commercial officer with Foundation Medicine, said the company has been around for two years, driving a paradigm change in oncology that will change lives over the next several years.
“Certainly for all of my life as a physican up until the most recent years, we thought about cancer as a disease that we treat based upon its location in the body,” he said.
“That is something that is clearly changing now to thinking less about the location of the tumor and more about the underlying molecular alterations that drive that tumor, and thus allow for targeted therapy.”
The center, which officials said is the first of its kind in the country, should lead to improved treatment guidelines as well as a databank that could help researchers around the world.
“We’re creating something in Greenville, S.C., which only exists as pieces elsewhere,” said Dr. Larry Gluck, medical director of the Cancer Institute.
“What our teams of physicians and scientists learn here will not only impact rare tumor research, but hopefully provide answers to other cancer issues,” he said.
“While cancer is immensely complex, some rare tumors may be driven by relatively fewer alterations; knowing what these alterations are may lead to more effective treatments — and provide valuable clues in the more common cancers.”
Edenfield cautions that a treatment plan won’t be found for all patients who undergo tumor sequencing.
“This field is still in its relative infancy,” he said, “but we hope our work will help grow it significantly.”
The $1 million from the Dempseys to launch the center is the largest individual gift ever given to the Cancer Institute.
“The way I look at it is I came out of the business community, and you’re always looking at unmet needs and how to fill them with a new service,” said Dempsey, who has served as CEO and president of a number of Fortune 500 companies, including Borg-Warner Corp.
“When I was president of Borg-Warner, we were able to develop the automatic transmission to replace the manual transmission,” he said. “I looked at this as another unmet need. And I felt it was important.”
Gluck said Dempsey stepped in to fill the gap.
“This gift is characteristic and reflective of Jerry Dempsey’s professional and philanthropic career,” he said. “He possesses the talent and initiative to pull together people, resources and thought leaders to do something new, innovative and pioneering.”
Dempsey, who also served as vice chairman of WMX Technologies, as chairman and CEO of Chemical Waste Management, and chairman and CEO of PPG Industries Inc., said he’s lived in many cities during his career, including Pittsburgh, which has the University of Pittsburgh Medical Center, and Houston, with the MD Anderson Cancer Center.
“Greenville,” he said, “can become the destination city for patients from all over the country who suffer from some form of rare tumors.”
Roberts, a widow with one daughter and five grandchildren, travels 74 miles each way to come to the Cancer Institute. Though perpetually tired these days, the former grocery store employee said she is now encouraged and determined to beat the cancer.
The new Rare Tumor Center, she said, gives her options where there were none just a short time ago.
“I was told by the oncologist I was seeing in Georgia that it was stage 4 about a year ago,” she said. “This a great idea for people like me who have run into so many dead ends and feel hopeless.
“It does give you hope.”