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People with questions about cancer now have a place to call

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The Fred Hutchinson Cancer Research Center provides live, trained specialists to help patients understand their diagnoses.

You or a loved one has just gotten some bad news at the doctor’s office, and it comes with a lot of unfamiliar words—except one that is all too familiar: cancer. All of a sudden, in addition to fear and worry, you’re full of questions. Google is a natural place to turn for answers. But Google, while great for information, can’t provide a human response, and a sympathetic ear.

For that, many people will pick up a phone and call a helpline run by The Fred Hutchinson Cancer Research Center in Seattle, where trained staff handle about 250 inquiries a day.

Funded primarily by the National Cancer Institute, with some support from the Veteran’s Administration, the helpline is known as the “Contact Center.”

“There will be about 1.7 million Americans diagnosed with cancer this year. For many of them, access to good information can be the difference between life and death,” Peter Garrett, a spokesperson for the National Cancer Institute, told National Public Radio.

More than 91,000 people reached out to the Contact Center via phone, email, or social media in 2016, says NPR. The center’s director, Nancy Gore, said that more and more people are making inquiries via live chat, email or social media. Thanks to the internet, call volume has gone down for the hotline: 40 years ago, when the service began, more callers sought answers to basic questions such as general cancer symptoms, which can now be taken care of with Internet searches.

Now, people more often need technical information about clinical trials and gene therapies, Gore told NPR.

And the complexity of the calls has increased. Eric Suni, a cancer information specialist at the center, said he has occasionally spent more than an hour on the phone.

“Sometimes people will call and say they have one quick question, but answering that one quick question requires a much more in-depth discussion because you can only answer that question by explaining some other concept,” Suni told NPR. “Even those that seem like, oh, this should take two minutes to answer is actually a much more involved conversation. So you never really know until it actually starts to unfold.”

In spite of the existence of patient groups on Facebook and other online resources, there’s still a need for live conversations. “In fact, it is such a common, common, comment that is shared with us that they [the clients] wish they had known we were here when they were first diagnosed, or when their mother was diagnosed,” Gore said.

Calls come from concerned patients who have been summoned back for a follow-up after routine cancer screenings. Or from people who need help figuring out questions to ask their doctors.

But shouldn’t patients be getting all the information they need from their physicians?

Gore says that sometimes the shock of a diagnosis can make it tough for a patient to focus.

“For most people, you don’t hear anything after the diagnosis,” she said. “You’re just processing the words.”

Thus, about 10 percent of the Contact Center’s “clients” are repeat callers.

NPR noted that other sources of information about cancer also exist, such as a 24-hour hotline run by the American Cancer Society, which received about 744,000 inquiries last year.

“Until a cancer diagnosis is part of someone’s family or close friend situation people are aware of it, but until it hits home you’re not that in tune to it,” Gore said. “Once it actually hits home, then people have intense interest and a thirst for knowledge because they want to understand.”

 

 

 

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