Bob's story begins with a long family history of colon tumors. His grandfather died of colon cancer disease and his mother is a colon cancer survivor. Despite this family history, his military Coast Guard doctors found every reason not to give Bob the colon cancer screening he requested. "You're too young for colon cancer," they told him.
From this experience, Bob developed his own personal mantra. "You have to be your own best healthcare advocate," he says with certainty. "With military health insurance," Bob explains, "you have to go with what the doctor tells you. There's not much of an option for a second opinion. I should have pushed harder to get what I needed."
Denial Seemed Easier
When Bob started having symptoms, including changes in bowel habits, fatigue and a cough, he found reasons to believe his doctor and doubt himself on the issue of colonoscopy. "I rationalized that there were other reasons for my symptoms," says Bob. "My long commute, the stress of being in a failing marriage, a new medication for high cholesterol…who knows why?"
Bob did have some blood tests that hinted at the trouble to come. His hematocrit, a measure of the health of red blood cells, was down to 14. This is a very low level for a healthy man. From the blood tests and other clues, Bob's doctors determined he might be bleeding internally. They finally referred him to the top-notch military hospital in Bethesda, Maryland.
Finding the Cancer, Facing Fear
Bob had a colonoscopy at Bethesda and found out he had colon cancer the next day. Bob explains, "The pathologists felt that based on my cancer cells, these tumors had been growing for about three years. If I'd have gotten that original colonoscopy I wanted, they'd have caught it before it developed into cancer. I never would have even had cancer!"
Family History of Colon Tumors Explained
Within 30 minutes of receiving his diagnosis, a researcher from the National Institutes of Health sat down with Bob to talk. "He explained that I had been diagnosed with HNPCC – Hereditary Non-polyposis Colorectal Cancer – and asked if I wanted to enroll in a study on genetics and cancer."
HNPCC is also referred to as Lynch syndrome.
Bob went on to have a right hemicolectomy surgery to remove the part of his colon with the tumors. He followed that with 6 months of chemotherapy. And, he decided he did want to be in that genetic study.
"But," says Bob, "genetic testing isn't for everyone. For some people, it's just too stressful."
Others may have different reasons that they want to know, or not know, about their genetic status for HNPCC. It's important to work with your doctor to decide what's right for you.
Bob finished his chemotherapy in 2002 and now is enrolled in a rigorous surveillance and colon cancer screening plan. Bob explains that, "The cancer caused by HNPCC can recur, so I'm on board with regular colonoscopy and endoscopy screening."
Endoscopy looks at the upper gastrointestinal (GI) tract. This is another area that can develop cancer in people with Lynch syndrome.
Bob talks easily about how the "ick factor" of getting screened for colon cancer is going away. He urges people to understand that you don't need to be an AARP (American Association of Retired People) card-carrying member to get colon cancer. Because too many people believe this, and their doctors do too, the disease often is diagnosed when it's advanced and harder to treat.
There is one very happy outcome of his experience with colon cancer. "I met Katie."
