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Cancer Registrar

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Many lives are touched by cancer. The work of cancer registrars is helping to change that.

Linda Mulvihill is a National Cancer Registrars Association (NCRA) board member. She is proud of the work that cancer registrars do.

In more than 20 years in the field, Mulvihill has seen how cancer registrars' work contributes to a tremendous change in cancer treatment and prevention. For example, the drop in breast cancer rates relates in part to cancer registry data showing a link between breast cancer and women taking estrogen. Statisticians projected the numbers, but they had to have data to work with. "How would they know the numbers if we didn't count them?" she asks. "We're the ones that supply the factual data."

Mulvihill says she entered the field because she likes science and enjoys details. "I don't think I would be well-suited for patient care," she adds.

The need for constant learning is challenging, however. Cancer registrars must keep up with changing computer and medical technology. They must also keep up with constantly changing codes. "It's becoming increasingly difficult because the changes are coming at us so quickly," she explains.

Carol Russell agrees that keeping up with the changes is the hardest part of the work. Russell is the manager of a cancer registry. She says that the coding rules change yearly. This means that the coders must be able to learn new codes regularly. They must also understand codes used in years past. They will encounter old codes when they are compiling records.

"You really have to like to code," Russell says. "You have to think about the things you are coding and abstracting."

With so many changes, it's not surprising that coding mistakes can happen -- and they sometimes lead to funny stories. For instance, one hospital noticed registry data showed an unusually high number of male patients with breast cancer. When they looked at individual records, they found the patients had names like Mary and Susan. It was a slip of the finger. A registrar had accidentally used the code for men instead of the code for women.

With more than 25 years of experience, Russell believes that the work registrars do makes a big difference. Shortly after starting her first job, Russell was snorkeling with friends in Hawaii when a woman asked what work she did. After she explained, the woman thanked her for being one of the people trying to find a cure for cancer. "What she said has always stayed with me," Russell tells us.

Cancer registrar Elaine Hamlyn agrees that the work is valuable, although she adds that she would prefer to be unemployed in a world without cancer. Hamlyn has worked for different agencies, and now works from home.

"My position might be unique in that I don't work for a specific agency like most of my colleagues," Hamlyn explains. To Hamlyn, the most challenging aspect is ensuring the data set is complete. When you are abstracting a case, you have to be sure to have all the information pertaining to that case. The head and neck is the most challenging anatomical site. There are many codes in such a small area.

Other than that, Hamlyn wishes that cancer registrars would receive more recognition. Many people do not understand their role. "We are constantly trying to raise the profile of what we do," she says.

Hamlyn says the work offers a lot of opportunity and variety. People can stay at the ground level if that is what they like to do. But some develop an interest in a certain topic and become a specialist in the area. For instance, some might specialize in quality improvement, or they might have site-based specialties such as the head and neck. "These people are the resources that we like to draw from," she comments.

Steven Peace is a senior study director for a private research company. He works on a large national lung cancer screening trial. Peace entered the field 25 years ago with a degree in management information systems. He discovered cancer registrar work almost by accident.

During his career, Peace has worked for various central cancer registries. He has managed a single and multi-hospital cancer registry. He has worked on clinical trials for an oncology group. He has published his writing. His education and wide range of experience gives him specific skills to work on the projects that he does.

Peace describes his current work as a liaison activity that bridges the medical information management group with the clinical management group. "The info management people talk geek talk and the clinical people talk doctor talk," he laughs. His role is to help them communicate with each other.

Like the others, Peace describes his career as rewarding. Over the years, he came to recognize that his work has a great deal of value.

He enjoys the constant new learning. "Also, I like to see my name in print," he jokes. "I can Google myself and find stuff which is kind of fun."

Peace's knowledge has also served him in his personal life. When Peace's father received a cancer diagnosis, Peace explained the situation to him in a way he would be able to understand. "I've served in that role many times over for family, friends and strangers," he comments. "I've seen more cancer patients than many physicians."

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