Pelotonia-Funded Initiatives Take Aim
The Ohio State University Comprehensive Cancer Center – James Cancer Hospital and Solove Research Institute (OSUCCC – James) is taking aim at cancer in the Buckeye state through three initiatives that promote early detection and better outcomes in colorectal, endometrial and lung cancers statewide. The initiatives take the OSUCCC – James’ individualized genetic screenings, education and care on the road through partnerships with more than 50 Ohio community hospitals.
“The goal of our statewide initiative program is to take state-of-the art science and translate it into the communities across Ohio to help elevate cancer patient care, prevention and education and reduce healthcare costs,” says OSUCCC Director and James CEO Michael A. Caligiuri, MD. “It is through these efforts that we take bigger steps together toward our pursuit of a cancer-free world.”
The initiatives are made possible through funding from Pelotonia, the grassroots organization that raises money for cancer research at the OSUCCC – James through an annual bicycling event. The first initiative, the Ohio Colorectal Cancer Prevention Initiative, launched in 2013. In November 2016 Pelotonia invested an additional $3 million to create the Beating Lung Cancer – In Ohio initiative. An additional $1 million investment announced in April 2017 kicked off the Ohio Prevention and Treatment of Endometrial Cancer program.
Pelotonia President and CEO Doug Ulman says the initiatives are tightly connected with Pelotonia’s mission. “The Pelotonia community is proud of our funding of three statewide initiatives — not only because they are great examples of fulfilling our mission, but more importantly because of the profound impact they are having on cancer care in Ohio and beyond, having already saved hundreds of lives.”
The First Initiative: Tackling Colorectal Cancer
Started in 2013, the Ohio Colorectal Cancer Prevention Initiative (OCCPI) set out to screen newly diagnosed colorectal cancer patients and their biological relatives for Lynch syndrome, a cancer-causing condition that occurs when a person inherits a mutation in one of four genes. Individuals with Lynch syndrome are very likely to develop colorectal, uterine, ovarian, stomach or other cancers.
Approximately 3 percent of colorectal cancer cases result from Lynch syndrome. Each colorectal cancer patient with Lynch syndrome has, on average, three relatives with the syndrome, heightening their risk for colorectal and other cancers. The screening, which occurred in a cooperative network of 50 hospitals around Ohio, identified family members who may be at risk of developing these cancers so they can take precautionary measures.
Says Heather Hampel, MS, LGC, associate director for the Division of Human Genetics at Ohio State and for Biospecimen Research at OSUCCC – James, “People with Lynch syndrome need intensive surveillance, with annual colonoscopies beginning at age 20-25. This increased monitoring can save lives by catching precancerous polyps early, before cancer develops.”
The OCCPI has charted the course for increased attention for those with the syndrome — screening more than 3,000 newly diagnosed colorectal cancer patients for Lynch syndrome and other genetic mutations. As of November 2016, 94 of the patients had tested positive for Lynch syndrome, as well as 116 of their relatives. An additional 69 colorectal cancer patients were found to have a hereditary cancer syndrome other than Lynch, surprising the initiative’s leaders.
“We expected to find a high rate of Lynch syndrome among early onset colon cancer patients,” says Rachel Pearlman, MS, LGC, coordinator of the statewide initiative. “What was surprising were some of the other gene mutations found, including mutations in genes traditionally linked to breast cancer risk, even in patients whose family history was no suggestive of those mutations.”
Based on their new data, the OCCPI team recommends genetic counseling and a broad, multigene panel test of cancer susceptibility genes for all early onset colorectal cancer patients, regardless of family history or the results of tumor screening for Lynch syndrome. This differs from current professional guidelines, which recommend all colorectal cancer patients be screened for Lynch syndrome, with referral for genetic counseling and Lynch syndrome-specific genetic testing if the tumor screening test is abnormal.
It is estimated that the OCCPI will save 1,000 years of life and provide $32 million in benefit to the community because of the lives saved in Ohio through the early diagnosis of Lynch syndrome and the reduced need for cancer treatment.
Looking to Reduce the Impact of Lung Cancer in Ohio
An estimated 224,390 people are diagnosed with lung cancer annually across the United States, and each year more people die of lung cancer than of colon, breast and prostate cancers combined.
In Ohio, those figures are especially alarming, as the state ranks 11th in cancer mortality and more Ohioans report smoking cigarettes (22 percent) compared with the national average (18 percent). Smoking is the leading risk factor for lung cancer and a leading risk factor for many other cancers.
Enter the OSUCCC – James’ Beating Lung Cancer – In Ohio (BLC-IO) initiative. Led by OSUCCC – James researchers Peter Shields, MD, David Carbone, MD, PhD, and Mary Ellen Wewers, PhD, MPH, the BLC-IO has two aims: to evaluate the impact of advanced gene testing and expert advice on lung cancer treatment and subsequent patient survival, and to improve smoking cessation rates among smokers with lung cancer and their family members. Both studies will measure improvements in patients’ quality of life.
To draw participants, BLC-IO is leveraging the relationships developed with community hospitals around Ohio through the OCCPI. Patient recruitment for BLC-IO began in March and will take place for three years. Other key partners in the effort include Foundation Medicine, a leading cancer gene testing company, and the Bonnie J. Addario Lung Cancer Foundation, established in 2006 to support lung cancer patients and fund lung cancer research. The BLC-IO received approval from Ohio State’s institutional review board to begin pilot testing last summer.
Endometrial Cancer: A Rising Threat
“Endometrial cancer is one of the few cancers with both rising incidence and death rates in the United States. Escalating our efforts to understand this disease and develop new therapies to treat it is critically important,” says David Cohn, MD, co-principal investigator of the Ohio Prevention and Treatment of Endometrial Cancer (OPTEC) research initiative and director of the Division of Gynecologic Oncology at Ohio State.
More than 61,000 women are diagnosed with endometrial cancer annually across the United States, with more than 17 percent of patients dying of the disease. Up to 5 percent of all women with endometrial cancer have inherited Lynch syndrome. The lifetime risk for endometrial cancer in a woman with Lynch syndrome is 50 percent, which is 10 times higher than a woman without Lynch syndrome. Women with Lynch syndrome have much the same risk for colon cancer as they do for endometrial cancer.
Through OPTEC, the OSUCCC – James will partner with Ohio community hospitals to screen up to 700 patients for Lynch syndrome and other inherited genetic mutations linked to an increased risk for endometrial, colon, stomach and ovarian cancer. At the same time, patient tumor samples will undergo molecular profiling to identify treatment approaches personalized to the patient’s unique tumor characteristics.
The OPTEC initiative will also help Lynch syndrome patients — and at-risk family members — understand the importance of genetic testing and cancer-prevention strategies based on their increased risk for Lynch syndrome-associated cancers. Researchers will create a patient registry to track endometrial cancer patients from the current study and affected family members to help increase compliance with follow-up care for cancer prevention.
“Our long-term goal is to educate both patients and providers about the continued management of Lynch syndrome associated cancers so that we can reduce the burden of this condition on all women and men who have this increased risk for cancer based on genetics,” says Cohn.
The OSUCCC – James Statewide Initiatives: A Roadmap for Other States to Follow
The impressive results of the OCCPI, the first of the statewide initiatives, will have an impact well beyond Ohio’s borders. “The OCCPI and our work over the past four years demonstrates that it is possible to screen all newly diagnosed colon cancer patients for genetic risk factors through a statewide hospital collaboration,” says Heather Hampel, OCCPI’s director. “And the findings of our research study demonstrate the need and value of screening early onset colorectal cancer patients.”
Hampel and her colleagues are now working to launch this approach nationally, promoting the screening of the 136,000 colorectal cancer patients expected to be diagnosed in 2017. “We believe the OCCPI can serve as a roadmap for other states to implement Lynch syndrome screening for their newly diagnosed colon cancer patients at the time of diagnosis,” says Hampel.
While the endometrial and lung cancer initiatives are in early stages, they too have the potential to yield findings that will save lives nationwide. Says OSUCCC Director and James CEO Michael A. Caligiuri, MD, “The statewide initiatives are generating a powerful momentum here in Ohio for early detection and better outcomes. The OSUCCC – James will be a national leader in the effort to use cutting-edge innovation in genetic testing to proactively save lives, and we are grateful to our partners at Pelotonia for funding this transformative work.”
The Power of Genetic Testing: One Family's Story
The Ohio Colorectal Cancer Prevention Initiative has had a powerful impact on Ohio families with inherited genetic risk factors. Take Dale S. and his family of Lima, Ohio.
After learning that one of his family members had enrolled in the study and then tested positive for a Lynch syndrome mutation, Dale scheduled genetic counseling and testing for himself. He learned that he also had Lynch syndrome. A colonoscopy found stage 1 colon cancer, and he is expected to do very well.
“I had my first screening colonoscopy at age 45 due to my family history – just one year before learning I also had Lynch syndrome and an early tumor,” says Dale. “The aggressiveness of this form of colon cancer is scary, but I think it is better to know. Now I know I have to stay vigilant for the rest of my life.”
More than 126 members of this family have been tested for Lynch syndrome through the OCCPI. Forty of them learned they have Lynch syndrome. Dale, a father of six, hopes that his children also will choose to get tested once they are of age.