Participating in a clinical trial fast-tracked breast cancer treatment
In December of 2022, Wendy Anderson felt a lump about the size of a large strawberry in her breast. She’d just had a mammogram that August that didn’t show anything unusual. Knowing lumps aren’t necessarily cancer, Wendy said she wasn’t too concerned but made an appointment with her primary care provider anyway. Her provider agreed that it might not be cancer but sent Wendy to get a mammogram and biopsy.
At those procedures, the healthcare providers told Wendy that the mass wasn’t typical of breast cancer because it could be moved around in her breast rather than being attached to one spot. Still, they sent a biopsy in for testing. Later, Wendy met with a breast surgeon and oncologist at M Health Fairview Breast Center in Maplewood. They still didn’t know if the mass was cancer, but recommended surgery to remove it.
“I’m a researcher,” said Wendy, who has a Ph.D. in critical rhetoric and critical digital media and is a lecturer of communication studies at the University of Minnesota. “I was there with my husband and friend. We all had our notebooks, and I knew I had to get a second opinion.”
On a friend’s referral and with an introduction from the Maplewood breast center doctors, Wendy saw Anne Blaes, MD, at Masonic Cancer Center, University of Minnesota four days later.
“I remember her saying, ‘I know you're waiting on results, but I'd really be surprised if this was not cancer because it came on so fast,’” Wendy said. “And I was really not ready for that. It felt like everybody had set me up to think it might not be – then suddenly it was – cancer.”
Wendy described the next couple of weeks as the busiest of her life. She was processing the diagnosis of an aggressive HER2 negative breast cancer, making treatment decisions, and trying to figure out what to tell her kids, then 8 and 11. At the same time, she was interviewing for tenure track positions at universities and trying to continue her research and teaching as if nothing was going on.
“I found myself not wanting to tell anybody that I had cancer,” Wendy said. “I was terrified of being known as cancer. I work so hard in my life as a scholar to publish my materials, and I work so hard as an instructor. I’m a parent of two kids. My husband and I adore each other. The idea that I would be reduced to cancer as my central identity was just devastating and scary. I didn’t want the pity, and I didn’t want the sadness.”
Participating in a clinical trial
Blaes offered Wendy a chance to participate in a clinical research trial called ISPY that adds a block of treatment onto the standard of care. For Wendy’s type of cancer, it uses immunotherapy, which uses medications to train the patient’s immune system to fight cancer. Wendy initially liked the idea of doing the trial and, after discussing it with a friend who previously had breast cancer, she committed.
“We like to say that we're giving ourselves a third shot on goal by participating in ISPY, so instead of having one or two shots with standard-of-care chemotherapy, we have three shots by adding these novel agents,” said Stephanie Kowalik, BSN, RN, a clinical research nurse. “Additionally, the trial provides a lot of extra information in the way of genetic and genomic testing, frequent MRIs, and input from investigators around the country who are ready to provide additional guidance.”
For Wendy, the experimental treatment was four immunotherapy infusion sessions. She also had weekly bloodwork and frequent MRIs to track the progress. After the first infusion, a scan showed her lesion was gone and the tumor had shrunk in half. After the infusion sessions, Wendy had surgery to remove what was left of the tumor, followed by radiation therapy to kill any remaining cancer cells.
The goal of the ISPY study was to see if new therapies could reduce the tumor’s size without the high levels of toxins that come with traditional chemotherapy and cause hair loss, nausea, vomiting, and weakness.
“Part of the study is to find drugs with lower side-effect profiles, so patients still get quality time with their families or can continue working if that's what they want to do,” Kowalik said.
It wasn’t all smooth sailing. Wendy did lose her hair and experienced fatigue, especially on infusion days. But she said she was fortunate to have participated in the clinical trial.
“With the trial, everything was fast-tracked,” Wendy said. “I was meeting with people immediately when I needed them.”
She also felt supported by a caring medical team. When she was feeling weak and having difficulty keeping food down, she was quickly referred to a physical therapist and dietitian who specialized in cancer care. Participating in the trial also came without financial impact since trial-related costs are billed to the study, not to the patient.
On May 6, 2023, Wendy received word that her breast cancer was gone.
Finding joy
Cancer isn’t something anyone wants to deal with, Wendy included. But she found some ways to make it more manageable.
Infusion days became dates
Wendy’s immunotherapy sessions were about four hours long, so she and her husband made the most of their kid-free time together. Even if she was feeling tired, she’d push through because it was an opportunity to connect with her husband. The appointments shifted from being something she dreaded to something she could look forward to.
“We play games and eat food together,” she said. “It was joyful to be together.”
Turning to the group chat
Wendy turned to a friend who was previously treated for breast cancer with questions and for support. When she saw that another friend announced her breast cancer diagnosis on Facebook, Wendy messaged her as well.
“They became my two people,” Wendy said. “They were the first ones I went to when something came up. We were all checking in on each other.”
Wendy also reached out to the Firefly Sisterhood, a mentorship program for breast cancer survivors.
Accepting help
“When my 8-year-old said, ‘I’m really afraid you’re going to die next month,’ I realized that I needed help,” Wendy said.
She asked a close cousin to share updates with the extended family. She accepted a ride home from a nurse when her infusion went long and her husband had to leave to pick up the kids. She asked friends and family to bring the family meals through MealTrain when she and her spouse were too exhausted to cook – and many were eager to help.
“It changed my entire life to realize how much community we have that all just wanted to be there for me,” Wendy said. "Some people would be in the way, but a lot of people wanted to be there for me, and they wanted to understand how to be there for me.”
Setting boundaries
Wendy quickly realized that her illness was difficult on some loved ones, and they wouldn’t be able to support her the way she needed. She learned that she had to say no to some offers of help if they weren’t what her family needed or would affect her mental health.
“I learned to say ‘yes, you can help me’ or ‘no, you can’t,’” Wendy said. “I took a lot of help from people that I’d never taken help from before, but I also realized that I needed to set boundaries with others.”
Letting go of control
Wendy decided early on that she needed to trust her doctors to decide on the best approach to treatment. Instead, she decided to focus on the artistic design she’d get on her body after.
“I can’t go back to what I was before, but this is what I can focus on in order to keep moving,” Wendy said.
Wendy doesn’t like the way cancer makes her feel or how it’s changing the body she’s always relied on. She’s questioned if it’s worth the fight. But her husband shows up for her and gives her space to process her emotions. A strong desire to be there for her children gives her the motivation to keep going.
“I want to live. I want to survive cancer, but it is hard to feel like me when so much of my body, so much of what I have been taught about who I am through that body, is being taken,” she wrote.
