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Many with cancer gene don’t want to know

Staff photo by Nick Daggy Fairfield Twp. resident and cancer survivor Janet Moran.

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By Tiffany Y. Latta, Staff Writer Updated 7:41 PM Friday, October 30, 2009

Editor’s note: This is part of a monthlong series on the battle against cancer in  Butler County.

When Janet Moran was diagnosed with advanced colon cancer at age 23 she knew more than most her age about the disease.

Her father had died from it six years earlier.

Her grandparents likely died as a result of some form of cancer years before her birth, leaving her father an orphan at age 2.

Moran, then a recent graduate of The Ohio State University, successfully battled colon cancer for two years with a combination of chemotherapy and radiation.

In 2008, after skin cancer was discovered on her arm and again throughout her colon, this time in its earliest stage, doctors at the Cleveland Clinic tested Moran for an inherited cancer gene.

It was positive.

“Everything finally made sense. I finally understood why,’’ said Moran, 55, of Fairfield Twp. “To know that my dad had this and I have this it gives me a chance to make sure I’m getting the proper treatment and the screenings I need. And it helps us as a family to know how to deal.’’

Moran inherited two genes (MSH2 and MLH1) associated with Hereditary Non-Polyposis Colorectal Cancer or HNPCC, which can be passed from parent to child.

HNPCC accounts for approximately 5 percent of all colorectal cancers. Those born with it have an 80 percent chance of developing the disease, according to the National Cancer Institute.

The genes discovered in the 1990s are among many now-known inherited cancer genes that allow scientists to determine a patient’s risk of diseases such as prostate, ovarian, uterine and breast cancer.

Testing, which typically involves a blood test, can help determine appropriate screenings, preventative surgeries and treatment plans.

But while the number of people seeking testing has increased in the last 10 years, only 3 percent of breast and ovarian cancer gene carriers have been identified, according to Myriad Genetics, a Utah-based biopharmaceutical company that analyzes the tests for the cancer genes.

The low percentage led Myriad officials to recently launch a public awareness campaign about genetic testing in five states in the Midwest, including Ohio, said David Bashaw, a Myriad spokesman.

Cincinnati Children’s Hospital Medical Center has conducted genetic testing for 13 years and sees about 500 to 700 patients annually.

And after offering testing in West Chester, officials saw a 90 percent increase in Butler County residents seeking testing between 2007 and 2008.

Doctors encourage people with a family history of cancer and those diagnosed with cancer at an early age to get tested.

“It’s very useful in high risk families. We can pinpoint which family members have a high risk,’’ said Jennifer Ruschman, clinical manager and laboratory genetic counselor in the Division of Human Genetics at Children’s.

But many potential carriers of a cancer gene aren’t getting tested due to a lack of knowledge about the tests, the expense, anxiety or fear of discrimination by insurance companies.

Genetic testing costs between $2,000 to $3,600 and is covered by most insurance agencies if the patient has a family history of cancer.

And the federal Genetic Information Nondiscrimination Act of 2008 shields patients from discrimination from insurance companies and, effective Nov. 21, workplace bias, too.

But Moran’s two children remain afraid of being tested.

“We’re so worried about how insurance companies will react...Having a hospital telling us it’s OK is not the same as an insurance company saying it’s OK,’’ said Moran’s 26-year-old daughter, who asked her name not be used.

Her daughter is also unsure she wants to know her genetic fate.

“It’s kind of scary,’’ she said, adding that she began getting colon cancer screenings at 18 as a precaution. “If it came back positive I think I would feel like it would be some kind of countdown.’’

Reducing anxiety about the test is a huge task, Ruschman said.

“The most common issue is anxiety about the future. They fear finding out they’re at risk of other cancers, they wonder what will they do if it’s positive, they’re concerned about passing it on and sometimes people just don’t want to know,’’ Ruschman said.

“As they get more information they become more relaxed... But they’re already scared because they’re seeing family members being diagnosed with cancer or dying from it. Genetic testing is more empowering than sitting back and being afraid.’’

Dr. Michael Watson, director of the American College of Medical Genetics, said genetic testing has played a key role in fighting cancer and other diseases and will likely lead to better treatments.

Watson said within five years researchers will be able to do a complete genetic analysis.

“There are people out there who may not want to know. There’s a subset of people who if they knew would act on the information and benefit and there are others who would rather bury their heads in the sand.’’

After Moran tested positive for the cancer genes she had her ovaries removed as a precaution.

“I’m really fortunate to have gone through this so many times and still be kicking,’’ Moran said. “I hope I don’t have to go through it again.’’

Contact this reporter at (513) 820-2180 or tlatta@coxohio.com.

Cancer facts

About a quarter of cancer genes are inherited.

The lifetime risk of developing colon cancer in America is 1 in 20. If you have the gene which predisposes you to this cancer, the risk of disease increases to an 80 to 90 percent chance..

Americans have a 10 to 12 percent lifetime risk of breast cancer; those with the gene have an 80 to 90 percent chance of developing the disease.

The ovarian cancer risk is just two percent, but people with the gene have a 20-40 percent chance of developing the disease.

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