At age 91 (and a half, as she won’t let you forget), Sylvia Rotskoff delights in recalling the moments she shared with her late husband Morris over 70 years of marriage, and with the strong, confident children they raised. But one moment stands out as clear and defining: the day 57 years ago when she and Morris were on vacation in Mexico, and she started bleeding from the rectum.

“I Want My Kids to Be Okay”

“I was perfectly healthy, so I wasn’t concerned,” Sylvia says. “It wasn’t until six months later, when I bled again, that I decided to tell our family doctor. He asked me if anyone in my family had cancer, and the answer was yes—cancer had killed my greatuncle and an aunt.”

The family doctor, surgeon Gerhardt Greunfeld, MD, removed some cancer from Sylvia’s colon at The Jewish Hospital of St. Louis (which later merged with Barnes Hospital to form Barnes-Jewish).

“From what I told him about my family members, he believed I’d inherited colon cancer,” Sylvia says. “And he was very concerned that my children would have this cancer someday. He wanted to try an experimental procedure on me that could cure my cancer and potentially help prevent new cancer from developing.”

“I said, ‘Do whatever you need to do—I want my kids to be okay.’”

Sylvia received a total colectomy (surgery removing the entire colon). It took two years for her to heal from the massive incision, but after the operation she was cancer-free.

Cancer Risk is 100 Percent

Today, Sylvia’s condition is called familial adenomatous polyposis (FAP). Patients who inherit FAP can develop colon polyps as early as puberty. Their risk of developing colon cancer if the polyps aren’t removed is 100 percent.

After polyp removal, patients with FAP must continue to be monitored closely because polyps and cancer can still develop. For Sylvia and her children, Ken and Linda, this meant regular exams with specialists. Linda Rotskoff was only 16 when she had her first polyp surgery, followed by screening and surgeries throughout her life as more polyps developed in her colon, stomach and part of her small intestine.

Linda recalls that before one of her surgeries, “I insisted, like your typical person from the ‘Show Me State,’ on proof that I needed to be cut open. The image I saw had 35 dots within a quarter inch of space, each full of polyps. Almost 1,000 polyps were found.”

“We Just Had to Make This Gift”

With the advent of genetic research and counseling, more of Sylvia’s own family and members of other families can find out if they have FAP and thus receive screening and treatment to manage the disease. But as funding is needed to save lives through research and continued identification of at-risk patients, Sylvia and Morris created a permanent source of support with a charitable gift to the Barnes-Jewish Hospital Foundation.

“We wanted our money to help someone,” Sylvia says.

Today, the Morris and Sylvia Rotskoff Endowed Registry Fund for Inherited Diseases of the Colon and Rectum improve care, diagnosis, ongoing screening and treatment options for patients with FAP and other inherited colon cancer syndromes.

"The registry has allowed us to understand FAP much better and as a result, to provide information to patients that will prolong their lives," says Nick Davidson, MD, Chief of the Division of Gastroenterology and principal investigator of the FAP family and genetic studies involving
the registry. "In general, patients with FAP who are not part of a registry will live to 50, while those who are on our registry will live to 70."

“I want everyone to know, especially my grandchildren, what can be done for a person with FAP,” Sylvia says. “We just had to make this gift. And I’m very glad we were able to do it while Morris was still alive.”

For the Rotskoffs, the impact of the registry is a personal crusade. “I’ll always remember Morris pleading with a family we met at a bar mitzvah to get their child screened for FAP. They didn’t, and she died of cancer at 41,” says Sylvia. “I’m grateful I’m here to talk about my
experience. And I’m very happy to be 91 1/2.”

Support research and patient care for inherited diseases of the colon and rectum, by giving online today to the Barnes-Jewish Hospital Foundation’s Morris and Sylvia Rotskoff Endowed Registry Fund for Inherited Diseases of the Colon and Rectum (#3370).

For more information on inherited cancer syndromes, please visit: colorectalregistry.wustl.edu.