Sanford Program Supports Cancer Survivors

By Alex Strauss

"You're a survivor from the moment you're diagnosed."

It's a mantra that is repeated over and over again among cancer care providers at Sanford. But, although Sanford has long offered the gamut of cancer treatment options, they have not always put the emphasis on survivorship that they do today.

"The concept of survivorship kind of birthed while I was in training in the early 2000s," says Dr. Shelby Terstriep, a Fargo-based medical oncologist who started Sanford's first Cancer Survivorship program in 2006. As a part of Mayo Clinic's innovation lab, Terstriep had observed first-hand what a small percentage of a cancer patient's life was devoted to treatment.

"I became passionate about, if we can save their life, how do we impact the rest of it?," she says.

From the beginning, Terstriep says survivorship programs shared much in common with palliative care, most notably the emphasis on quality of life, through treatment and beyond.

"I think the improved cancer survival rates we are seeing now helped bring this to the forefront," says Terstriep, who has continued to serve as medical director of the Survivorship Program through its ongoing evolution.

"Many more people are now living with a history of cancer. And many people with cancer are also living longer. It's a great thing but it does mean that we have had to take a closer look at how we are supporting those survivors," she says.

The Right Resources at The Right Time

In simple terms, the Sanford Health Cancer Survivorship Program encompasses everything a cancer survivor might need to live their best life, outside of the treatment itself.

But, because cancer survivors are such a diverse group, these needs can vary widely. They may range from things like emotional support with diagnosis and treatment, to minimizing treatment side effects, to coping with social and financial concerns, to reducing the risk for recurrence, to very specific issues such as preserving fertility after cancer or talking to children about it.

"Their needs tend to change a lot over the years after diagnosis, as well," says Dr. Terstriep. "In the beginning, we are helping them deal with the uncertainty and handling the fear of cancer coming back. Five years later, they may start to be more concerned about things like how to reduce the risk for their children or how to reduce their own risk of getting other cancers."

At any point in their cancer journey, a patient can request a survivorship appointment with a nurse navigator who can help them connect with the right resources, whether it's a support group, a financial advisor, a nutritionist, or something else.

Regular focus groups help ensure that the program continues to address the evolving needs of patients, survivors, and families. The oncofertility program, which addresses fertility concerns and preservation from the start of a patient's treatment, was a direct result of feedback from cancer survivors.

Evolution of Survivorship Care

The Cancer Survivorship program started small with some grant money from what is now the Sanford Health Foundation. "Early on it was about the low-hanging fruit," says Dr. Terstriep. "We were asking 'How do we get providers thinking about this?'. There was a lot of shared learning in those early days."

Today, survivorship care is not only about education, but also strategic programs to help with specific aspects of life during and after cancer. A $1.8 million grant from the CDC in 2019 has enabled the program to expand its offerings in four areas patients have said they wanted:

Stress reduction, including the integration of more non-medical coping tools like mindfulness, acupressure, and biofeedback

Support for the children of cancer survivors, including a program designed to help reduce secondary trauma to young children and empowering families to talk openly about cancer
Improved care equity for groups such as Native Americans and the LGBTQ community to ensure that no patients fall through the gaps by failing to get their followup screenings
Financial "toxicity"- the idea that the financial fallout from cancer treatment can be as toxic as the drugs used to treat it - and bringing on counselors to connect patients with financial programs and other resources

On the Front Lines

Andrea Mell and Megan Rogers are nurse navigators who help guide patients and survivors through Sanford's range of resources.

They and other navigators provide education, coordinate appointments, and maintain constant contact throughout the treatment process, watching for barriers to compliance, and connecting patients with the support they need, when they need it.

"It brings me back to the reason I became a nurse," says Mell, a Breast Cancer Nurse Navigator who is the first point of contact for newly-diagnosed breast cancer patients. "We know it's not going to be easy, but we want them to be able to go through the hardest time in their lives as easily as possible. These programs really support the whole person."

"It can be easy to focus just on curing the disease," adds Rogers, a Survivorship and Oncofertility Nurse Navigator. "But having a program with so many different branches gives us the opportunity to say 'You're not cancer. You are a person who has cancer. We know that it is only one part of who you are.' It strengthens our ability to form a relationship with patients because they feel that they are not alone."

Meeting Needs Beyond the Survivorship Program

As much as Terstriep and her colleagues would like for the Survivorship Program to meet the needs of every patient in every situation, they know it's not possible. To help fill some of gaps they could not even anticipate, Sanford has recently partnered with a technology platform called "We're In This Together" or WIIT.

"WIIT sort of takes the concept of a wedding registry and combines it with the GoFundMe concept," explains Terstriep. "It allows patients to share specific things they need when they are going through treatment."

Through the WIIT registry, community members can support individual patients financially or through acts of service. Terstriep says many patients share requests like a ride for their children, homemade meals, a place to stay during out-of-town radiation treatment, or just someone to walk the dog. And the needs don't always stop when treatment ends.

"Oftentimes, even in primary care, we may not recognize all of the lifelong things that patients deal with after cancer," says Dr. Terstriep, who reminds primary care providers that cancer survivors can still get help from the program even after they are no longer seeing an oncologist.

"Survivorship is life long," she says. "We really need to look at the whole picture and the whole person to have the best outcomes. If we look at the person from a whole person perspective, we can feel really good about what we do in healthcare."

"Our goal is to minimize the long term effects of cancer so they don't have to carry that cancer with them for years to come," says Rogers. "So that when they look back, their cancer diagnosis isn't something that is going to shadow them for their whole life."