Duveen Sturgeon, R.N., right, and Paul Wise, M.D., talk with patient Charles Wilson about the new Hereditary Colorectal Cancer Registry. (photo by Susan Urmy)
Colorectal cancer’s family ties sadly strong
Despite a healthy lifestyle and youth on her side, 47-year-old Jane Sentner has spent the better part of a decade fighting cancer, thanks to what she calls bad genes.
“I'm unfortunately the winner of the gene pool jackpot,” said the four-time cancer survivor. “All of my aunts and uncles died before they were 60 of stomach or colon cancer.” Her mother had breast and colon cancer and died at 59. Her father had a heart attack that claimed his life at 44.
Sentner has something called Lynch syndrome, or hereditary nonpolyposis colorectal cancer (HNPCC). It's a rare disorder, but having this inherited syndrome means you have more than an 80 percent chance of developing colorectal cancer and are at high risk for developing several other types of cancer. HNPCC causes cancer to grow and spread more quickly than typical colon or other cancers.
Sentner was first diagnosed with ovarian cancer when she was 38, before she called Nashville home. During the surgery, her doctors also discovered a very early endometrial cancer and removed the area of concern. After a hysterectomy and six months of chemotherapy, a routine CT scan lit up an area of concern in her rectum. It was stage III colorectal cancer.
“I didn't even know it was there,” she said. Surgeons removed about eight inches of her colon and managed to spare Sentner a colostomy bag. She went back on chemotherapy for another six months, followed by five weeks of radiation.
She went for about six years with a clean slate, and in the meantime moved to Nashville. But a routine colonoscopy found another colon cancer. It was caught early and Sentner's new surgeon, Vanderbilt's Alan Herline, M.D., only needed to remove a few inches of her colon.
Though several doctors had mentioned the idea of genetic testing, Sentner didn't think too much about it. Four cancers later, she was ready to be tested, but in the back of her mind she already knew the outcome. “This just doesn't happen — four separate primary cancers?”
That's exactly what Herline thought when he began caring for Sentner.
“We used to think colorectal cancer was greater than 90 percent sporadic, but now we think it's only about a 60 percent range with 30-40 percent being familial. More and more we're seeing it is largely familial,” said Herline.
Tests revealed the expected and Sentner soon began doing her part by informing younger relatives they may be at risk, too, and should be screened for colon and other cancers at an earlier age than traditional guidelines recommend.
“If one family member tests positive for this mutation they need to start colonoscopies between 20 to 25 years of age, when it's preventable,” said Duveen Sturgeon, R.N.
Sturgeon is the program coordinator for a new Hereditary Colorectal Cancer Registry at Vanderbilt-Ingram Cancer Center. She'll be on the lookout for patients like Sentner, to help reach out to their loved ones for early screening and prevention. She said it is the first registry of its kind for colorectal cancer in Tennessee.
“We want to start here at Vanderbilt, but eventually we want to go out into the community, talk to other community physicians. Right now Tennessee has no hereditary colorectal cancer registry and neither does southern Kentucky,” said Sturgeon.
There will be a monthly clinic for patients identified at high-risk for having HNPCC, and a multidisciplinary team will evaluate each case before the patient's visit. Sturgeon will work with the patient to schedule necessary screening tests for colorectal and other related cancers.
“We're hoping for one-stop shopping, so people can come in, have colonoscopies, biopsies, and appointments with all the people that they really need to see,” said Sturgeon.
Paul Wise, M.D., a colorectal surgeon, is heading up the new Vanderbilt Hereditary Colorectal Cancer Registry with Sturgeon and said it will be a win-win situation for patients and providers.
“We are in the process of creating a tissue and serum repository from the patients in the registry, both to support current research efforts as well as potential future research down the line.
“We hope to find out if there is a protein signature to help diagnose the family members that are at risk for cancer. This could be in the form of a blood test that would be easier than biopsies and cheaper than genetic testing,” said Wise.
Information will be logged and tracked in a special database for high-risk colorectal cancer patients using software created by the Cleveland Clinic. It allows Wise and Sturgeon to track polyp information, other diseases, treatment information, and family history and even draws a pedigree for each patient.
“It gives us a pictorial representation of what's going on cancer-wise in the families,” said Sturgeon. She said the software program also generates a reminder letter to inform high-risk patients when they're due for another checkup.
Sentner said people should not be afraid to be screened for colorectal cancer.
“It is not a big deal. How could one day of your life — a little inconvenience — possibly compete with the confidence of knowing you've been checked.”
To find out more about screening guidelines for colorectal cancer and the Hereditary Colorectal Cancer Registry at Vanderbilt-Ingram go to: www.vanderbiltcolorectal.com.