The bad news? You’ve just been diagnosed with cancer. The worse news? The country’s in the middle of a pandemic and you can’t connect with your oncologist.
Thankfully, there is good news. Dozens of people are ready and waiting to answer every single question you have about your cancer diagnosis, treatment plan, therapy and recovery, and they’ll help you navigate the changes wrought by the current COVID-19 pandemic. These trained professionals won’t charge you a dime, they won’t capture (and sell) your data for their own purposes and they’ll spend as much time with you as you need, in English or in Spanish. What’s more, you don’t even have to leave your house to connect with them.
Who are these people? They’re the Cancer Information Specialists at the federally-funded National Cancer Institute Contact Center at 1.800.4.CANCER, otherwise known as the Cancer Information Service, your tax dollars at work.
“We’re here to be of value to the public, of value to the NCI,” said Dawn Sittauer, a 30-year veteran of this NCI service and current program director of the CIS, which is operated via a government contract through Fred Hutchinson Cancer Research Center in Seattle. “Taxpayers are our stakeholders. We serve them to the best of our ability — always.”
Evidenced-based info and empathy
They serve even in the midst of a pandemic, as it turns out.
The CIS, which recently had to transform its 67-person office into a remote operation, has lately been fielding calls about the new coronavirus and how measures like social distancing are impacting cancer treatment. They’re also answering basic questions about hand washing and the safety of going out for groceries.
“Normally, people call us as soon as they’re diagnosed or they’re waiting for a test result,” Sittauer said. “Now, we’re hearing from people who can’t get through to their doctors or they want to know if they’re at increased risk for COVID-19 because they’ve had cancer or are on cancer treatment.”
People are also calling with concerns about COVID-19-driven delays in diagnostics, screening and a host of other procedures, including surgery, worried about the safety of postponing cancer-related care.
“That’s causing some anxiety,” Sittauer said. “Our goal is to convey to people that these decisions are being made with their safety in mind. We have ‘risk- vs.-benefit’ conversations with them and explain, depending on their circumstance, that it may be OK to delay procedures. And we always refer them back to their health care team about their specific concerns.”
As with a lot of conversations about cancer, it’s not always easy.
“A lot of people are emotionally distraught, crying and upset,” said Cesar Salmeron, a bilingual cancer information specialist who’s been with the CIS almost 10 years. “Sometimes it can be emotionally challenging.”
But, he said, “empathy is a big part of our service.”
“People are really struggling, especially now,” he said. “There are a lot of people not only affected by a cancer diagnosis, but the collective trauma and uncertainty of the ongoing pandemic. Many people have chemotherapy or immunotherapy scheduled and they wonder if these treatments should be postponed. Or they’ve already been postponed and they’re wondering about the risks from a delay in care. We do our best to be present with these patients and provide empathy whenever appropriate.”
Longstanding but ‘little-known’ service
These days, the CIS team is doing this at their kitchen tables and living-rooms-turned-offices — like so many others around the world.
Sittauer helped head up the coronavirus-driven transition to remote services for CIS’s 47 cancer information specialists plus administrative staff, which happened in three waves, beginning March 5 and ending March 20.
“We began with this very sane, phased approach to start working from home and then everything went sideways,” she said, referring to the news of a COVID-19 outbreak in Seattle. “Our plan ended up being quite accelerated but our staff was amazingly flexible and patient, and everybody did so well, it felt like a well-oiled machine.”
Did people calling in with cancer questions even notice?
“Our move to a remote system was invisible to them,” she said. “That was our goal. We wanted no degradation of service in any way. It’s so important that people get the highest quality of service and access. That’s the standard we set for ourselves and what the government holds us to.”
For 45 years, CIS has provided information on all things cancer — and smoking cessation — via phone, email or live chat to people all over the U.S. and beyond. They share information about clinical trials and conduct trial searches for every type of cancer. They spend as long as necessary on each interaction and send resources via email. They provide smoking-cessation counseling and even do follow-up calls to eligible veterans to support them through their quit process. They even follow up with cancer patients who’ve received clinical trial information to make sure any follow-up questions are answered. And they offer this information free of charge — in English or Spanish — to anyone who needs it, no matter where they live.
Yet, CIS is “relatively little-known,” as NPR put it in a 2017 story.
“First I’ve heard of it,” said inflammatory breast cancer patient Anna Gorman from Portland, Oregon, via Twitter. “I don’t recall my primary physician or even the oncology clinic mentioning it. There wasn’t even a sign on a wall. It would have been really helpful.”
Despite its under-the-radar status, though, the service is well used. A 2007 research paper tallied over 10 million calls since its creation in 1976. Sittauer said these days, the service averages 8,500 interactions per month via its phone line, email, Live Help, social media responses and follow-up calls. CIS is currently receiving around 150 COVID-19-related inquiries a week, she said, “a number that’s been increasing since the early days of the pandemic.”
Still, as Sittaeur puts it, “We’re a big secret.”
Information, no strings attached
While it’s true that CIS is not a household name like WebMD or Google, it also doesn’t collect anything from users except the occasional note of gratitude.
No one harvests personal information in exchange for using the service as with other consumer medical websites, which commonly share user information with sites like Facebook or Google. No ads for suggested cancer treatment centers or miracle cancer cures pop up on users’ computers as the result of a transaction.
Statistics are gathered, but only to improve the service.
CIS is also one of the few health information services that provides carefully curated evidenced-based information. Resources are thoroughly vetted and clients get facts, not information courtesy of a favored “sponsor.”
“In a world where Dr. Google can lead you down some very strange uncurated roads, it’s good to know there’s a trusted source for cancer information,” Sittauer said.
“There’s obviously a desire and commitment to raise our profile,” she said, pointing out that the NCI just launched a media campaign encouraging people to tap CIS with questions about COVID-19 and cancer. “Not just for the sake of more people knowing about us, but so we can be of benefit to more people.”
Kathy Briant worked as a cancer information specialist with CIS for more than 10 years, first at Memorial Sloan Kettering Cancer Center, back when the service was spread across the country, and then in Seattle, after Fred Hutch took over in 2010 as the sole center for the NCI service. She remains a huge fan.
“The information they provide is just incredible; it’s a treasure chest,” she said. “They do an assessment and tailor information for what you’re looking for. They share it over the phone, or via chat, then send it via mail afterward. It’s very in-depth. And it’s an anonymous service.”
Program administrator for the Hutch’s Office of Community Outreach and Engagement, Briant said it was her experience working with the CIS, helping the medically underserved, that inspired her to go into health disparities research.
She’s even tapped the service herself at times.
“When my dad was diagnosed, I called them to get information and resources,” she said. “Even now, I will do instant messaging with an information specialist when I’m looking for a statistic or a resource. It’s instantaneous. And they’re open 12 hours a day.”
Research and a renewal
For the last four years, Jaimee Heffner, PhD, a Hutch clinical psychologist who specializes in smoking cessation, has used the CIS for research aimed at helping veterans stop smoking. Her current project, a collaboration with Steven Zeliadt, PhD, at the Veterans Administration Puget Sound Health Care System, uses the CIS to provide proactive telephone counseling and cessation medications to veterans undergoing lung cancer screening.
“CIS was truly the ideal partner for this project,” she said. “I can’t imagine doing this research with anyone else, particularly given how enthusiastic, thoughtful and committed they’ve been as research partners. There’s a real feeling we’re on the same team, that our respective research and service missions are well-aligned.”
Heffner, whose research often involves technology-delivered interventions, said CIS provides an invaluable service — on multiple levels.
“There are times when human connection is really important,” she said. “People need to have the ability to pick up a phone or send a message and talk to someone when they need support or guidance during a very difficult time in their life, whether it’s a new cancer diagnosis or preparing to take a big, anxiety-provoking step like quitting smoking.”
More important, she said, they need solid, accurate information from a trustworthy source.
“There’s a lot of information out there and it can be daunting to wade through all of it, trying to make sense of it, and figure out what’s science-backed and what’s not,” she said.
Given its stellar reputation, it’s not too surprising the NCI just awarded Fred Hutch the CIS contract for another five years.
The current contract ends April 30; the new contract will run through April 30, 2025, a small cause for celebration amid uncertain times.
This article was originally published on April 28, 2020, by Hutch News. It is republished with permission.