Faces of Chromophobe: Catherine Yutmeyer and World Kidney Cancer Day!
Patient Highlight
We’re excited to launch a new monthly series spotlighting individuals living with or beyond chromophobe renal cell carcinoma. Each month, we’ll share one patient’s story, treatment path, challenges, and reflections on life after cancer.
Our goal is to put real faces and voices to this rare diagnosis, both familiar names and new ones, and to foster deeper understanding, connection, and support within our community. Up first is Catherine Yutmeyer.
Patient Spotlight: Catherine Yutmeyer
Location: Shelbyville, Illinois | Diagnosis: Stage-IV Chromophobe RCC
A Discovery Like No Other
One evening in March 2020, while standing at home, Catherine felt something unusual under her hand, a lump on her side. She felt completely healthy otherwise. The very next morning, a stat CT was ordered. That evening, her doctor called: her 9.5 cm mass looked like kidney cancer. Within two weeks, she underwent a radical nephrectomy.
“It all happened pretty quickly.” – Catherine
From Shock to Reality
Catherine recalls being in a state of disbelief when she first received the diagnosis. She was shocked that something so serious could happen to someone young, healthy, and a seasoned physician assistant. She expected someone to call and tell her it was all a mistake. When told her cancer was “cured” she felt uneasy, this was far from the end. A second opinion discovered metastatic nodules in her lungs, upgrading her to Stage IV chRCC.
Though Catherine had medical experience (14 years as a physician assistant practicing family medicine) it wasn’t until her own diagnosis that she truly learned about chromophobe RCC. She describes the disease in one word: “Nightmare.”
Treatment Choices & Side-Effect Management
Her treatment journey began with radical nephrectomy. Once they discovered the cancer had metastasized, she had systemic therapy including Lenvima, Keytruda, and later Inlyta. The side effects were intense: ovarian failure, hypothyroidism, hypertension, hand-foot syndrome, hoarseness, cough, diarrhea, hair thinning, vomiting, fatigue, and colitis.
To manage these challenges:
She takes daily medications for hormone and blood pressure regulation.
Manages colitis with a hospitalization and a course of prednisone.
Swapped high heels for sneakers, soaking her hands and feet and applying steroid creams to ease hand-foot syndrome.
“It’s definitely a routine!”
Her husband, mother, and oncology colleague were pivotal in treatment decisions, helping advocate for her and offering much-needed emotional support.
Communication & What’s Missing
Though her team generally communicated clearly, Catherine wishes she’d been better informed when symptom escalation required medical attention, and that she’d have been offered support groups or therapy early on. She emphasizes, “Sometimes you don’t realize you need these things until you do.”
Kidney Health & Lifestyle Changes
With a single kidney, Catherine focuses on hydration, a kidney-friendly diet, and kidney monitoring. Every three months she has labs (including kidney function), urine tests, and CT scans of the chest, abdomen, and pelvis. She also has annual brain MRIs to ease anxiety, a bone scan at diagnosis and again at five years, and monthly Signatera blood tests. She avoids alcohol and NSAIDs, drinks plenty of water, tracks intake, cut protein shakes, and leans toward a plant-based diet. However, her gut doesn’t always agree, low-fiber foods soothe her stomach, while healthier options often don’t.
Emotional Roller Coaster
Chromophobe RCC has tested Catherine physically and emotionally. She describes living with fear, facing the prospect of not seeing her son grow up or aging alongside her husband. The disease has been a stark reminder not to take life’s everyday moments for granted, even while sadness and anxiety still linger.
Her bedrock? Family and chosen family: husband, mother, friends, fellow chromophobe patients, including five diagnosed around the same time. They formed deep, supportive bonds that have been essential to her emotional well-being.
Advice to New Patients
Catherine encourages newly diagnosed patients to:
Advocate loudly for themselves
Ask every question (even the ones that feel “dumb”)
Seek second and third opinions
Educate themselves
And ask for help when it’s needed
What Should People Know About Chromophobe RCC?
Though chromophobe patients may appear outwardly well, thanks to targeted treatments with fewer classic side effects, inside they’re often struggling to manage fatigue, nausea, colitis, and more. Catherine points out how misleading appearances can be:
“Often people think I’m ‘just fine’ because I look fairly normal when in reality I’ve slept all day, took 2 anti-nausea pills, 6 anti-diarrhea pills, iced and bandaged my feet and am rocking an adult diaper all just to meet you for coffee.”
Driving Research
Catherine's impact extends far beyond her personal journey. In 2021, she spearheaded efforts to establish the first-ever patient-led chromophobe RCC research grant through KCCure. What began as a grassroots fundraising effort that raised over $30,000 initially has now grown into an annual $50,000 award program. This initiative has funded grants to Memorial Sloan Kettering in 2022, Brigham & Women's Hospital in 2023, and Dr. Lisa Henske's team in 2024.
This pioneering work helped establish the foundation for chromophobe-specific research that continues to grow today, including her ongoing involvement with organizations like COA (Chromophobe and Oncocytic Tumor Alliance) and other advocacy efforts focused on advancing research and supporting patients.
Hopes for the Future
Catherine remains filled with hope and she’s so proud of what this small cancer community has accomplished in only a few years. She dreams of biomarkers and biobank initiatives for chromophobe RCC, increased research funding, a chromophobe patient registry, and ultimately waking up one day to a cure.
Gratitude & Hope
Despite the challenges, Catherine highlights her gratitude for:
Family and friends who “willed” her to stay,
Fellow patients who uplift one another,
A growing research community driven by patient-empowerment,
And the transformative power of directed advocacy.
“My hope is the fuel that keeps me going every day.”