If you think that holding a job, being a partner and parenting three kids while receiving care for stage 4 breast cancer is plenty, you’re absolutely right. But not for Stefanie LeJeunesse. She’s juggling all these roles and also making time to advocate for herself and others living with cancer. The thing is, she can’t really help it.
“I’ve been a community organizer my entire life. My mom dragged me along to her NOW (National Organization for Women) meetings when I was a kid. So, it was a natural progression for me,” said LeJeunesse. “When I was diagnosed, it was immediately very easy for me to see where there were gaps in care, support and treatment, and I’m not someone who can let that slide. I try to plug a hole when I see one, and that’s what I did.”
Volunteer patient advocates, like LeJeunesse, contribute to the lives of others with cancer in a myriad of ways, from pressing for more-inclusive clinical trials to styling wigs for people who’ve lost their hair due to chemotherapy. Whatever the need, a patient advocate somewhere is probably trying to meet it.
LeJeunesse was diagnosed with de novo metastatic lobular breast cancer when she came to Fred Hutch Cancer Center for a second opinion in the fall of 2020. (A local cancer center near her home had misdiagnosed her with earlier-stage disease.) “De novo metastatic” means the cancer had already spread to distant parts of her body at the time of diagnosis.
A long-time writer, she now works mainly for a transitional program helping young adults with disabilities build life skills and prepare for jobs. She also hosts the podcast “Cancer for Breakfast” with Amy Dials, where they explore a range of topics that might be of interest to “cancer people” — a term they use affectionately for anyone who has had or is living with the disease.
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Her advocacy work also includes attending events, like the Value in Cancer Care Summit and International Invasive Lobular Breast Cancer Symposium in 2023; tracking the latest developments in cancer research; and sharing what she learns. She and Dials regularly produce a podcast segment called “RATS,” for Recent Advances in Treatment and Science.
“I’m a clinical trials fanatic,” said LeJeunesse, who enrolled in a study at Fred Hutch on the imaging technique FES-PET/CT right after her diagnosis. “I love asking my oncologist whenever I hear about a new trial in the news.”
Patient advocates have been pivotal in advancing cancer research, says Rachel Yung, MD, LeJeunesse’s medical oncologist. For example, they’ve pushed researchers to learn more about inflammatory breast cancer, find new options to treat metastatic disease and stop excluding patients with brain metastases from clinical trials.
“When I started my career about 15 years ago, there were some patient advocates involved in research, but it wasn’t well established,” Yung said. “Now, patient advocates are involved in all the cooperative research groups, such as SWOG, NRG Oncology and the Translational Breast Cancer Research Consortium. They are getting center stage in terms of having presentations at the annual meeting of the American Society of Clinical Oncology.”
It’s critical for patients to be involved in clinical research not only as study participants but also to help with study design, she said.
“Having the communities who are most affected involved from the very beginning is essential so that researchers know what questions matter to them, where their priorities lie and whether or not certain treatments are going to be feasible,” said Yung.
She appreciates what LeJeunesse is doing to make information on research more accessible through the podcast.
“I’ve been really impressed with how amazing her understanding is of the science and how well she describes difficult concepts. That’s part of the reason I recommend the podcast to people,” said Yung. “The quality of what she’s putting out is incredible.”
Arguably, LeJeunesse’s most creative advocacy effort so far was renovating a decommissioned cabulance, turning it into a mobile distribution center for cancer-related information and products, like breast prostheses, as well as space for small support groups. The Breast Cancer Care-a-van, as it’s known, has literally and figuratively been a vehicle for reaching others.
In the rural countryside around Mount Vernon, Washington, where LeJeunesse lives with her family, it’s easy for people with cancer to feel isolated. “So, those in-person connections are super important,” she said.
Not every person with cancer will want to start a podcast, follow research or renovate a cabulance, of course. In fact, not everybody has the capacity at any given time to do more than what it takes to simply get through a day — an achievement that doesn’t always feel so simple.
For anyone considering getting into patient advocacy, LeJeunesse recommends going at your own pace and letting your strengths and curiosities guide you.
“There are as many ways to be a patient advocate as there are people in the world,” she said. “Think about what you really enjoy doing because, especially if you still have cancer, you don’t need to be adding things to your plate that are a struggle — unless you really want to embrace a growth mindset!”
Here are a handful of ideas LeJeunesse offered for how to use your strengths or interests to support other patients.
“All of these are ways of putting ourselves out there for others to find and commune with. That’s community, and that’s the foundation of patient advocacy — building community, whether among patients or between patients, clinicians and researchers,” said LeJeunesse. When each person pursues what interests them, “this can create a really tight tapestry of coverage.”
Interested in helping out? Sign Up to Become a Volunteer.
You can find LeJeunesse on Threads @lejeunesse and Instagram @cancerforbreakfastpod.
Resources
To learn more about becoming a patient advocate, here are some resources:
Laurie Fronek is a writer and editor specializing in health and medicine. Based in Seattle, she has written for health care-industry clients, including clinics, hospitals, research institutions, insurers and publishers, around the country. Reach her at lauriefronek@comcast.net.
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Are you interested in reprinting or republishing this story? Be our guest! We want to help connect people with the information they need. We just ask that you link back to the original article, preserve the author’s byline and refrain from making edits that alter the original context. Questions? Email us at communications@fredhutch.org
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