Answers to Cancer, and Now COVID-19

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 (https://www.cancer.gov/contact), your (US) 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 Cancer Information Service, or CIS, 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.”

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,” said Sittauer. “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 versus 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, they’re not easy discussions.

“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.”

 “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.”

These days, the CIS team is doing this at their kitchen tables and living-rooms-turned-offices.

Sittauer helped head up the transition to remote services for the service’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 sudden 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 (https://tinyurl.com/y7avn5f5). Despite its under-the-radar status, though, the service is well used. A 2007 research paper, (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3172672),  tallied over 10 million calls since its creation in 1976. Still, as Sittauer puts it, “we’re a big secret.”

While CIS may not be a household name like WebMD or Google, they also don’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 info with sites like Facebook or Google. No ads for suggested cancer treatment centers or miracle cancer cures pop up on users’ computers as a 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 un-curated roads, it’s good to know there’s a trusted source for cancer information,” said Sittauer. 

Given its stellar reputation, it’s not too surprising the National Cancer Institute just awarded Fred Hutchinson Cancer Research Center 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.

Submitted by: Candace Maynard, National Cancer Institute (NCI)