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Colon cancer -- not just an 'old folks' disease

Alpa Agarwal
(Alan Yatagai, photographer)

Alpa Agarwal was a woman on the move. In late 2004, the 30-ish software marketing expert was happily anticipating her transfer from Microsoft’s Seattle headquarters to its Silicon Valley campus.

One day, she noticed bleeding from her rectum.

As often occurs in adults under 50 who have rectal bleeding, Agarwal was misdiagnosed. Her primary physician dismissed her symptoms as hemorrhoids.

‘Could I have cancer?’

Agarwal moved to California and settled into the job and her new apartment. Fitness-minded, she exercised regularly, ate a healthy diet that excluded red meat and didn’t smoke.

The bleeding persisted. She started to have abdominal pain.

“My body was behaving in a way I couldn’t understand. I knew it was more than hemorrhoids,” Agarwal said.

After a few weeks of waiting, Agarwal decided to disregard the advice of her Seattle doctor and drove to the emergency room at Stanford Hospital. The attending physician advised her to have a colonoscopy as soon as possible.

“I didn’t know what a colonoscopy was, let alone what it was used for. I was given an information sheet about the procedure, and I immediately zeroed in on the word ‘cancer.’  I still remember thinking: ‘Cancer. Could I have cancer?’”

Per instruction, she scheduled a colonoscopy (not at Stanford). Afterward, the gastroenterologist phoned.

“He told me he didn’t have a lot of time to talk, but that the biopsy confirmed I had cancer,” Agarwal said.

Too young to have colon cancer?

Colorectal cancer develops with few, if any, symptoms. If symptoms are present, they may include blood in the stool, unexplained weight loss, stomach discomfort or a change in bowel habits.

Found in the earliest stages, colon cancer is more than 90% curable. It also is fully treatable and preventable when detected early and polyps and cancerous lesions are removed.

According to the National Cancer Institute, an estimated 50,000 people will die of colorectal cancer in 2010. That figure is 20 percent lower than the number of colorectal cancer-related deaths in 2000. Researchers attribute the decline in colorectal cancer deaths to aggressive public education campaigns, increased screening and improved therapies. Recent studies suggest that as screenings and better-targeted, less-toxic treatments become commonly used, the death rate for colorectal cancer could fall by half by 2020.

Current colorectal cancer screening guidelines recommend a colonoscopy for anyone over the age of 50. More than 90 percent of people diagnosed with colorectal cancer are 50 years or older. That’s why colonoscopy screening is so important in older adults.

Most “under-50s” aren’t screened for colorectal cancer because the incidence in this group is low. Young adults also are not screened because health care costs make use of this routine test questionable in a low-risk population.

Younger patients are screened if they have a family history of colorectal cancer, or have chronic inflammatory bowel disease or a predisposing genetic condition. Individuals with a family history of colorectal cancer should begin regular screening 10 years before the age a first-degree relative was diagnosed with colon cancer. For example, if an uncle was diagnosed at age 52, the patient should start having screening colonoscopies at age 42.

Unlike Agarwal, who had no family history of colorectal cancer, most young people with the disease have a hereditary condition known as familial adenomatous polyposis (FAP), which causes hundreds to thousands of small growths called polyps to develop in the colon. Unless the colon is removed, 100 percent of these patients will get colorectal cancer, usually by their late 30s.

Another inherited syndrome is non-polyposis colorectal cancer (HNPCC). Individuals with this condition also develop polyps, but not in the numbers seen in FAP, and at a later age.

Additionally, individuals whose parents have had colonic polyps or colon cancer at a young age are at higher risk for developing colon cancer.

A small group of patients under the age of 50 are diagnosed with sporadic (non-hereditary) colorectal cancer. However, that population is growing. A 2009 study found that the incidence of colorectal cancer per 100,000 young individuals (aged 20 to 49 years) increased 1.5 per year in men and 1.6 percent in women from 1992 to 2005.

The study’s authors suggested several possible reasons for the rise, including skyrocketing rates of obesity, a major risk factor for colorectal cancer. Another possible cause of the rise is a fivefold increase in consumption of fast food among children and a threefold increase among adults.

Acts of kindness

After a less-than-reassuring meeting with a surgeon recommended by the doctor who’d performed her colonoscopy, the methodical Agarwal went into “problem-solving mode,” in part to deal with the emotions triggered by her diagnosis.

“Friends and family would call crying about my illness,” she said. “I’d respond, ‘Listen, I’ve got 10 action items here. Can you help me find the best colorectal cancer surgeon?’”

A few weeks later, Agarwal’s cousin Rupal Pinto, then in medical school, referred her to Stanford gastroenterologist Jacques Van Dam, MD, PhD.

Agarwal emailed Dr. Van Dam and, even though it was a Sunday night, he responded, telling her to call him. He said he’d see her at 10 am the next day. By the time she arrived, he had scheduled a CAT scan and an appointment in the colon cancer clinic at the Stanford Cancer Center.

Tests confirmed that she had cancer. She required surgery, followed by chemotherapy.

“That act of kindness saved my life. Imagine what would have happened if I’d listened to the doctor in Seattle,” Agarwal said.  

Surgical oncologists Andrew Shelton, MD, and Mark Welton, MD, removed the tumor from Agarwal’s colon. For the chemotherapy portion of her treatment, Agarwal decided to go to Johns Hopkins Hospital in Baltimore so she could be close to her mother and brother, who lived nearby.

During chemotherapy, Agarwal continued her duties at Microsoft, thanks in large part to the support of her managers Jane Boulware and Bob Foulon and other colleagues.

“That support gave me strength and helped me believe in myself,” she said.

Agarwal also launched a blog to exorcise negative emotions and reach out to other cancer patients. As she articulated her fears, she became empowered to fight her cancer. After successfully completing chemotherapy, Agarwal went to work on fulfilling her dreams, including taking a cruise to Antarctica.

The responsible thing to do

By discussing Agarwal’s case, Van Dam is not recommending colonoscopy screening for all adults under 50.

“However,” he said, “the fact that Alpa, who was in her 30s, presented with more than an early-stage cancer should focus attention on the reality that if you’re 50, you shouldn’t delay having a colonoscopy until age 55, even if you’ve always eaten well, exercised and have no family history,” he said.

Van Dam noted the success of programs that educate women about the need for breast and gynecologic cancer screening and men about having PSA tests and rectal exams to screen for prostate cancer. As a result of these efforts, death rates for breast, gynecologic and prostate cancer have declined.

“We need to do the same with colorectal cancer screening,” Van Dam said. “We must impress on the public that having a colonoscopy at age 50 is the responsible thing to do. It’s something you do for yourself and your family.”

Since her cancer experience, Agarwal has become an activist, speaking out on the importance of patients actively participating in their health care. Looking back, she is baffled why preventive health wasn’t part of her very well-rounded, formal education.

“In English literature class, I had to study the works of Shakespeare. In biology class, I had to memorize the number of legs of a centipede,” Agarwal said. “But I wasn’t taught about disease prevention in school, which I believe should be essential to the curriculum. If I’d known that rectal bleeding is serious, I would have questioned my doctor’s diagnosis of hemorrhoids and insisted on having a colonoscopy.”

--By Elizabeth Crown

Posted: 05/13/10

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