January 5, 2021

Strengthening survivorship: new program ties together clinical, research efforts at UW Carbone

Madison, Wis. — By 2030, the United States will be home to more than 22 million cancer survivors. That’s about five million more than today, and about 10 million more than in 2010.

This steadily-growing number of cancer survivors can be partially explained by the more effective treatments and early-detection methods we now have for many cancers. But it’s also due to the fact that the incidence rate of some cancers is still going up.

While the word ‘survivor’ may seem to imply only individuals who have been cured of cancer, the actual definition is much broader and includes anybody who has ever been diagnosed with cancer.  

“In that term survivor, you can actually encompass all of the cancer spectrum,” said Amye Tevaarwerk, MD, an oncologist and UW Carbone Cancer Center member. “A survivor is someone who’s just been told they have cancer, someone who’s on active curative intent therapy, someone who’s completed that active therapy and has moved to a maintenance or a surveillance phase, as well as someone who is living chronically with incurable cancer.”

From diagnosis to end-of-life, UW Carbone is committed to meeting the needs of this growing population. But survivorship has a very broad range, meaning there’s often no one-sized-fits-all approach to meet these needs. A seven-year-old recovering from neuroblastoma will have much different care requirements than a recently diagnosed metastatic breast cancer patient in her 70s.

That’s where UW Carbone’s new Survivorship Program aims to help. Created as a centralized resource for survivorship clinical activities and research, the program aims to ensure that every cancer survivor, no matter their background, has the best care for their unique situation.

“We’re working incredibly hard to coordinate this care and to make it as consistent and equitable as possible,” said Tevaarwerk, who also serves as director of the UW Carbone Cancer Center's Survivorship Program.

While UW already has individual survivorship programs for specific cancer types, Tevaarwerk says it became clear that having a hub to connect survivorship research and clinical needs would be beneficial. Initial conversations about the creation of such a program began in 2018, and the program was officially formalized in early 2020.

Over the past several months, Tevaarwerk and her team have been hard at work building the backbone of the program, taking stock of what survivorship work was already happening at UW, compiling information and determining what holes needed to be filled.

“Good care and good research both start with having good data,” Tevaarwerk said. “So far, a major push of our program has been to really define what’s going on right now and understanding the state of survivorship at UW Carbone.”

Since the launch, the program has been rapidly gaining steam. Over a dozen faculty members are now involved with the program, including a mix of physicians and researchers from a variety of disciplines.

Clinically, Tevaarwerk says the program isn’t aimed at replacing what doctors are already doing, but rather, providing them with support and being readily available for questions. “We are really serving as a resource for clinical care,” Tevaarwerk said. “We won’t be providing the clinical care, but we’ll be helping to establish best practices and guidance for how we do survivorship care for the UW.”

This might mean making sure oncologists or other providers have access to specialists or information about all applicable clinical trials for a certain patient.   

On the research front, the program is facilitating both new and existing survivorship research projects. And there’s a lot already being done. In 2020, UW Carbone members published numerous survivorship studies and scholarly articles that ranged from the effect of immunotherapy on fertility to how changing health behaviors, such as physical activity and smoking, can improve quality of life for lymphoma survivors.

The program also highlights funding opportunities, conferences and other resources that help researchers strengthen their work.

More research projects are also in the works. Tevaarwerk says ongoing research is taking place that looks at improving care coordination, as well as how novel health care delivery methods may benefit cancer survivors. One project looks at how patient health portals, such as MyChart, are working for survivors, while another looks at the effectiveness of telehealth – something that’s become extra important since COVID-19.

The Survivorship Program is also working with Amanda Parkes, MD, who is building an additional program aimed specifically at supporting the needs of adolescent and young adult (AYA) survivors.

Overall, Tevaarwerk says she’s excited about the progress that’s already been made, as well as what’s to come. 

“We’ve got a lot going on for being a program that’s been around for less than a year,” she said. “And stay tuned, because we’ve got even more great stuff planned.”