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About 60 percent of Wisconsin’s breast cancer survivors are early-stage with low risk of recurrence.
For these patients, their cancer was localized and successfully treated with surgery alone, or with surgery and radiation. Many also have spent several years taking medicine to target hormone receptors. While there’s relief to have no evidence of disease, the transition to a monitoring mode—and only a few oncologist visits per year—can be daunting.
Dr. Heather Neuman, associate professor in the Division of Surgical Oncology at UW’s School of Medicine and Public Health, envisions new tech-based methods of follow-up to give these patients more peace of mind and better side-effect management.
Neuman is the lead investigator on Remote Electronic Assessment of Survivors with Tailored Follow-up Recommendations and Survivorship Messaging (REASSURE), a new pilot study that uses surveys and other electronic methods to help patients monitor their well-being, manage symptoms, prepare for doctor visits and access survivorship resources.
“We’re focused on what this can do beyond usual care,” said Neuman. “We anticipate that survivors will feel that their symptoms and concerns are better assessed and addressed, and that the number of symptoms will go down.”
A new approach
The goal of REASSURE is improving patient quality of life and providing additional resources for good health and well-being.
This initiative involves the use of surveys about common maladies these early-stage survivors may face. The questions cover possible signs of cancer recurrence as well as survivorship discomforts, like hot flashes and chest wall pain.
“A lot of these questions assess things that might not necessarily come up in the course of a routine visit, but can be answered very quickly through a survey,” Neuman said.
In addition to tracking symptoms, Neuman said REASSURE would also be a method of giving patients additional information about survivorship and promoting overall wellness beyond their cancer diagnosis.
Neuman said REASSURE could also reduce the need for clinic visits that can be a travel burden, especially for patients who live farther from Madison. These low-risk survivors typically have 2-3 follow-up visits a year with their providers, but if a patient’s survey results indicate they are feeling well, they can choose to forgo a visit if they feel comfortable.
“People will always have the option to see their provider if they want,” she said.
REASSURE incorporates years of research, preparation, and input from health care providers and breast cancer survivors.
“As we learn more and more about what survivorship means, it got me thinking that there’s a lot of people who need more information, and there’s only so much you can do in the confines of a short visit to make sure we’re covering everything that was important to the patient,” she said.
Neuman knew patient buy-in would be a key part of REASSURE’s success. She worked extensively with UW’s Breast Cancer Research Advisory Network, a group that connects breast cancer survivors and advocates to researchers to offer survivors’ input on grant applications, clinical trial proposals, and other projects.
Survivor Julie Pofahl had reservations about telehealth services when she first heard of Neuman’s idea in 2018. During the COVID-19 pandemic, when clinic visits were limited or unavailable, she said she could see the advances in that technology and care delivery as a helpful supplement to in-person visits.
“It could be a good way to do a more thorough screening than physicians or a nurse practitioner has time for in a normal visit,” she said of the REASSURE method.
Deb Tobin appreciated Neuman’s focus on hearing multiple perspectives, even among patients.
“Each patient’s experience is unique,” she said.
Tobin and fellow BCRAN advocate Nancy Thorne Cahill remember the sense of panic they felt when their follow-up visits went down to one or two times a year.
“You’re part of this medical team that’s with you every step of the way, and it becomes this sort of extended family to you because you’re so focused on treatment,” Tobin said. “What happens, and not always right away, is when that ends very suddenly, you feel this huge disconnect.”
“You’re floating on an island,” Thorne Cahill added. “It's very important that patients continue to feel as though they have support and attention. I appreciate Dr. Neuman's efforts to find alternative solutions.”
The survivors highlighted the need for resources that addressed the emotional impacts of recovery and coping. Sexual health also is a critical issue that may not come up during clinic visits.
Pofahl thinks the information provided through REASSURE could also help survivors better plan for specific questions and concerns to bring up during clinic visits.
“I was really happy with the way the questions turned out, because to me they were encouraging good, honest feedback,” she said.