Eden Stotsky was just a freshman in college when she began having painful abdominal cramps, and doctors were at a loss to explain them.
Lactose intolerance, a pulled muscle, irritable bowel syndrome, even the way she drank water through a straw -- all were cited as possible causes for the recurring pains.
FOR THE RECORD - A quotation from colon cancer survivor Eden Stotsky in Sunday's Home & Family section was incorrect. It should have said that polyps are "an abnormal growth" in the colon. The Sun regrets the error.
But it wasn't until a few years later, when Stotsky collapsed after climbing four flights of stairs, that she knew something was "seriously wrong."
Stotsky, then 26, got a colonoscopy in which doctors discovered an orange-sized, malignant tumor. Colon cancer was a diagnosis that neither the doctors nor Stotsky expected since 90 percent of colorectal cancer cases affect people 50 years old or older.
Surgery was scheduled for six weeks after the tumor was found. During the wait, Stotsky says, she showed every symptom for colon cancer. "It was as though it happened overnight. I had rectal bleeding, I was constipated, I was losing weight one day and the next day I would be 10 pounds heavier."
According to Dr. Michael Choti, director of the Johns Hopkins Colon Cancer Center, colon cancer is more common in older people, and "that's why screening for the average risk for Americans doesn't start until age 50."
That's a main reason why younger people are misdiagnosed more easily, he said. "It would be useful to take warning that it can occur in younger patients. In general I think if somebody presents symptoms [of colon cancer], one needs to at least stay on top of it."
The American Cancer Society says about 150,000 new cases of colorectal cancer -- colon cancer and rectal cancer -- are diagnosed each year. It kills about 55,000, making it the second leading cause of cancer deaths in the U.S., after lung cancer.
In Stotsky's case, her December 1997 surgery revealed her cancer was in Stage III -- meaning it had spread to nearby lymph nodes, but not to other parts of the body. That prognosis that put her odds of a five-year survival at 66 percent, according to the Cancer Society.
"[Stage] III was clearly on the wrong side of the middle mark," Stotsky says. "It was not a good prognosis."
'My life stopped'
Stotsky began chemotherapy about a month after her surgery, getting injections every day for a week, followed by three weeks off. This cycle repeated six times.
During part of this time, Stotsky also received radiation treatment every day for six weeks. Getting chemotherapy along with radiation wore her down and, by the end, she could no longer drive herself to treatment, she says.
"For the first couple of months, my life stopped. I did nothing but focus on going to treatment, getting sleep, eating well, getting my work done," she says. "I could still function at work; I didn't want to miss work."
At the time, Stotsky worked in the human resources department at Johns Hopkins. It wasn't until after her treatment that Choti asked whether she would be interested in heading a peer education program for colon-cancer patients that he was creating.
She told Choti she would think about it and in the meantime volunteered with the Cancer Society. There, Stotsky says, she began considering working with cancer patients as a career. "I thought, 'Oh, I like this cancer community work, I could make a full time job of this.' "
Stotsky accepted Choti's offer and started work in early 2002.
At first, she says, "I felt like a fish out of water. I didn't go to medical school, I'm not a nurse. My first-hand experience only takes me so far. On the flip side of things, I've walked in all of these patient's shoes."
Stotsky, now 32, has her own office on the eighth floor of the Outpatient Center at Johns Hopkins, where she is surrounded by photographs of friends and family, colon cancer pamphlets and information.
Easing the fears
She says her greatest responsibility is making sure each patient's journey with cancer is as smooth as it can be. She educates cancer patients on the process, gets answers to their questions and tries to be their main resource.
"This is probably one of the scariest times in their life. They don't know where to go, they don't know who to ask, they are literally paralyzed with fear," she says. "Part of my job is to ease that fear and help them along."
Choti calls Stotsky a very dynamic woman and says he jumped at the chance to recruit her.
"Dealing with this disease is very stressful and complicated," he says. "Her role ... is to try to facilitate patients' treatment plans and reduce their stress."
Having recently celebrated her six-year survival mark, Stotsky has kept her positive attitude and remained cancer free. She reminds people to get colonoscopies, know their family histories and listen to their bodies.
"When you go for a colonoscopy, they are looking for polyps, which are a normal growth in the colon," she says. "All colon cancer starts as a polyp. If you remove the polyp, you are removing the chance of it ever becoming cancer."
Colon cancer is "preventable, it's treatable, it's beatable," she says, "and if it's caught early, it's 90 to 95 percent curable."
Colon cancer warning signs
* A change in bowel habits
* Chronic diarrhea, constipation, or feeling that the bowel does not empty completely
* Blood in the stool
* Abdominal discomfort
* Unexplained weight loss
* Chronic fatigue
-- National Institutes of Health, National Cancer Institute
* American Cancer Society, www.cancer.org or your local chapter. Area offices include White Marsh (410-931-6850) and Gambrills (410-721-4304).
* The Colon Cancer Alliance, www.ccalliance.org, or Helpline, 877-422-2030