For Ellen Jane Baker, cancer, unfortunately, always felt like something she’d inevitably be diagnosed with. She had lost her grandmother and both of her parents to the disease (her mother at 52 years old from lung cancer and her father at 68 from pancreatic) and watched other family members be diagnosed.
“Everyone in my family had cancer,” she said. “I thought it was just a matter of time. It was a ‘when,’ not an ‘if.’”
For a long time, Ellen dealt with complications from fibrocystic disease in her breasts. At 38 years old with two young daughters at home, she had had a large, pre-cancerous mass removed, after which she started being screened more often. She estimates that she had about 25 biopsies over about 15 years.
By 2005, she was weighing whether to have a prophylactic double mastectomy and instead opted to have a breast reduction. For a year after, a persistent pain in her left breast nagged at her.
“The through line of my whole experience with cancer is I knew something was wrong and everybody was telling me there was nothing wrong,” she said. “The plastic surgeon kept telling me, cancer doesn’t hurt, but after a year, I insisted that they do a mammogram and a sonogram.”
In 2006, when she got the call that she did, in fact, have cancer in her breast, Ellen wasn’t terribly shocked in the moment.
“I hung up the phone, and I went to Home Depot to buy a new toilet for the bathroom,” she remembered. “I knew that with all the trouble I had had over the years that this was going to happen. I just didn’t realize it would happen so quickly after I had the reduction, because supposedly the biopsies they did on my tissues were clean.”
Ellen was diagnosed with hormone receptor–positive breast cancer and began treatment with chemotherapy, which was “just miserable—there is no other way to say it.”
At the time of her first diagnosis, her daughters Sara and Katie were 17 and 15, respectively. Even when she was sick from treatment, she made family time a priority, Sara remembers.
“She made us breakfast before school every day and took me prom dress shopping in a wheelchair,” Sara said.
After having a double mastectomy and reconstruction, she then spent years in and out of corrective surgeries because of ongoing issues with her implants. Doctors also monitored a suspicious lesion on her rib that they had detected in 2006, and she kept up with her regular check-ups. As she marked five years and then 10 years since her diagnosis, Ellen thought about how her risk of recurrence seemed further and further behind her.
Then, at the beginning of 2020, Ellen started experiencing a startling pain on her side that felt “like somebody was putting a sword through my rib.” A mammogram, ultrasound, and MRI were all clear for cancer. But after a year of physical therapy, the pain hadn’t gone away.
“I just kept thinking, ‘This is not right.’ I finally got someone to order a bone scan and a CT scan,” she said. “I was waiting in the lobby of the cancer center, and my email said I had new MyChart results. They said ‘metastatic disease.’ It was unbelievable.”
Both Katie and Sara said they knew something was wrong when the group FaceTime call came through.
“She said, ‘Are you sitting down? Because I need you to be strong with me,’” Katie said. “When she told us, I felt like I got wind knocked out of me. I went over to her house and didn’t leave for days.”
Over the last two years, Ellen has sought additional opinions from leaders in breast cancer research. She found an oncologist who not only an expert on breast cancer mutations and how they affect disease progression but was willing to think outside the box and involve Ellen in shared decision-making.
“I now feel that I’m getting the benefit of all the great research that is happening,” she said.
Though her cancer has metastasized to her bones and lungs, the disease is under control and her first-line treatment has worked well to date. Like many people with metastatic breast cancer during the pandemic, she is vigilant about her health—masking in public, avoiding crowds, and eating outside at restaurants.
Confronting a recurrence 16 years after her first diagnosis was shocking, but Ellen tries to keep a positive outlook. She focuses on spending time doing things and being with people who bring her joy, and she continues to work as an executive coach—a career that gives her even more purpose now. But, Ellen said, just because she carries her diagnosis well, doesn’t mean it isn’t heavy or frightening.
“The first experience had an end date. This does not have an end date,” she said. “About 90 percent of the time I don’t think of myself as a cancer patient, but I do live in the perpetual unknown.”
A big reason Ellen has been able to feel “normal” so much of the time has been thanks to her daughters’ support.
“My mom is my best friend—and I feel super lucky for that,” Sara said. “I admire her because she’s a fighter. I love that she is fearless.”
Sara, who works in healthcare communications, was very familiar with metastatic cancer before her mom’s diagnosis, so she’s been able to help advocate for her mom and stay current on research.
“In my work, I hear about women and men living with metastatic disease for 10-plus years or longer,” Sara said. “The advancements we’ve made are inspiring, and they’ve made me feel a lot more hopeful.”
Ellen has always considered herself someone who lived life out loud because she had lost her parents at young ages. She’s deeply passionate about travel and experiencing other cultures.
“I’m determined to do all the things that they never did,” she said. “Cancer just made me more intent on doing what I wanted to do and seeing the places I wanted to see.”
Recently, Ellen and her daughter Sara checked a major bucket-list destination off her list: Bora Bora.
“After I got the call that I had breast cancer and got back from Home Depot, I remember spinning a globe we had in our living room. I thought, ‘What’s the furthest place in the world from where I am right this moment?’ It was Bora Bora,” she remembered. “I said to myself then: ‘That’s where I have to be in my head because I can’t be here.’ Now, 16 years later, I’ve finally visited.”
Ellen says research is the reason she can live a full life and have such meaningful time with her girls. Because they are also high risk for breast cancer, she hopes new breakthroughs can spare them the same experiences she had.
Before her diagnosis what she knew about metastatic breast cancer was that it “equals death.” But in learning about the progress research has made, finding the right provider, and talking to other women who live with the disease, she is more optimistic—and feels she is on the cutting edge of future research.
“It’s very uplifting to think that this could be a long-term, chronic disease,” she said. “All this research is going to really help people survive a lot longer.”
Read more stories from BCRF’s Research Is the Reason storytelling initiative here.
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