When retiree Nancy Schmidt received her ovarian cancer diagnosis in July 2016, she had one concern—surviving. “Once you have the diagnosis, all you can think about is, What can I do to save myself, to keep living, to put this behind me as best I can,” says Schmidt, whose mother died of the disease years ago. 

She was more than willing to undergo the surgery and chemotherapy her oncologist recommended, even though she had apprehensions about the possible side effects. “Those were things I could live with,” she says. 

Today, however, the effects of treatment are her daily concern. She struggles with indigestion exacerbated by a surgery to reduce the size of the tumor. She’s had to ease up on a favorite pastime, walking, because chemotherapy caused loss of feeling in her feet. She can no longer wear contact lenses because of numbness in her fingers. “Every time I tried to wash them, I broke them because I couldn’t tell how much pressure I was putting on the lenses,” she explains, calling the fact that she has to wear glasses “a little fly in the soup I hadn’t counted on.” 

She’s grateful to be in remission, but says, “Cancer kind of changes your lifestyle.” 

Schmidt was looking for help dealing with those and other problems when her doctor asked if she’d be interested in taking part in a new study of gynecologic cancer survivors. The University of Minnesota Gynecologic Oncology—Life after Diagnosis (GOLD) study, which began enrolling participants in January 2017, follows cancer survivors for five years.  

Every six months, they answer questions about their lingering side effects, emotional health, and social interactions. In return, participants receive information about cancer survivorship and are invited to quarterly events, where they can meet each other and hear experts talk about nutrition, exercise, and other topics. Schmidt liked the idea of having an opportunity to meet others who were trying to live life after diagnosis and treatment. “Nobody knows what it’s like unless you’ve walked through it,” she says.

Finding GOLD

The GOLD study is the brainchild of Rachel Isaksson Vogel, a researcher in the U of M Medical School’s Department of Obstetrics, Gynecology, and Women’s Health. She’s made it her mission to learn more about cancer survivors in order to find ways to improve their lives. “We want to know, What is their life like? What lingering side effects do they have? What is their emotional health? Are they having trouble with social interactions?” she says. “What does survivorship look like?” They’re already finding, for example, that a high percentage of cancer survivors screen positive for post-traumatic stress disorder.

Vogel’s research interest developed through personal tragedy. While she was working on her Ph.D. in epidemiology, her 23-year-old brother was diagnosed with glioblastoma, an aggressive brain cancer. She became his primary caregiver. 

The experience gave Vogel a front-row view of his three-year journey through disease and treatment. 

“It was awful,” she says. He lost his ability to walk and swallow. Radiation caused extreme fatigue. Chemotherapy led to a stroke. “I saw very physical effects. There were lots of emotional effects, social effects. It really touched every part of his life and ours.”

The experience was career-altering for Vogel, who had planned to do research on some aspect of cancer but wasn’t quite sure what. She found her mission: “I knew I wanted to focus my career on improving the quality of life for people diagnosed with cancer,” she says. 

Vogel did her dissertation on melanoma survivors, finding that a surprisingly high number of them failed to protect themselves from sun exposure after being diagnosed. The study attracted attention in the media as well as in medicine. And in 2016, Vogel was named the Masonic Cancer Center Women’s Health Research Scholar, a title that came with funding for two years so that she could dedicate 100 percent of her time to research. 

In addition to the GOLD study, which received support from the Jan Chorzempa Cancer Research Fund, she’s investigating what is commonly called “chemo brain”—a complaint of many who say they are easily distracted, have poor recall, or struggle with concentration after undergoing chemotherapy. When Vogel delved into the existing research on the issue, she found little was known about the problem, which is thought to affect between 15 percent and 50 percent of cancer patients.

She is now studying chemo brain in ovarian cancer survivors, trying to identify factors that might help predict who will experience cognitive problems. Women in the study undergo cognitive tests before, during, and six months after chemotherapy. They also have their blood tested and answer questions about such things as whether they worry about their memory or frequently forget why they went into a room.

Vogel is casting a wide net, hoping it might yield a surprising finding. She’s working on two hypotheses. One is that a gene related to Alzheimer’s disease might predispose people to the cognitive problems caused by cancer drugs. The other is that vitamin B12 may be related to cognitive function. She describes these hypotheses as shots in the dark. “At this point, so little is known that we get to be creative in determining what might be going on,” she says.  

Vogel’s dream is to be able to identify and help the women most likely to get chemo brain. “And if it’s something that’s easily modifiable, like vitamin B12, that would be amazing,” she says, “because not only would we tell them that chemo might cause some symptoms, but we’d have a way to help prevent or treat them.”

The gift of time

Participants in Vogel’s research have told her they are grateful that someone is taking their concerns seriously. “They’re thankful we are willing to be open to these issues and allow their questions,” she says.

And she is grateful to have the time and funding to focus on understanding and helping survivors. Vogel knows other young investigators without such support who must squeeze in time for their research along with their other clinical and teaching responsibilities. 

One thing that makes the Masonic Cancer Center funding especially important is that cancer survivorship research is not yet strongly backed by federal research centers like the National Institutes of Health. “Unfortunately, a lot of investigators are kind of at the whim of whatever funding agencies are interested in,” she says. 

“This support lets me focus on what I’m interested in.”

Even though she hasn’t yet published the results of her findings, Vogel’s work is having an impact on women like Schmidt, who are using information gleaned at GOLD events while also contributing to scientific knowledge. As Schmidt says, “It is great to be able to pass on what I know to others, so that they can benefit from it.” 

Carmen Peota is a Minneapolis writer and editor.