Finding Hope at IKCS 2025: A Stage 4 Chromophobe RCC Patient’s Perspective

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This is a guest post by Catherine Yutmeyer, a patient advocate diagnosed with stage 4 chromophobe renal cell carcinoma. Catherine attended the Kidney Cancer Association’s 2025 International Kidney Cancer Symposium (IKCS): North America, held in Denver, Colorado on November 13-15. She shared her insights, takeaways, and overall experience at the meeting.

Five years ago, I was diagnosed with stage IV chromophobe renal cell carcinoma (chRCC). I never imagined I’d be sitting here today, reflecting on the International Kidney Cancer Symposium that I recently attended and running on the fumes of hope it left behind. I traveled to Denver to celebrate my five-year cancerversary with two close chRCC friends, a milestone I’m deeply grateful to reach. The symposium being held in the same city felt fitting: a celebration of survival meeting a glimpse of future possibilities.

As a patient with a rare subtype, I was hesitant to get too excited about the conference. When I was first diagnosed, I felt anything but hopeful. I was scared and overwhelmed, like so many others facing a cancer with little information to guide us. I approached the conference with apprehension, not wanting to get my hopes up that there might be even a whisper about chromophobe RCC.

But for all of us RCC patients with uncommon subtypes, the 2025 International Kidney Cancer Symposium was nothing less than a triumph.

Momentum

Much to my surprise, uncommon kidney cancers weren’t an afterthought at IKCS but rather a prominent force. The meeting agenda included an entire session dedicated to non-clear cell kidney cancer. I counted eight presentations on the less common RCC subtypes, five of them oral presentations on chRCC specifically, along with numerous poster presentations. The growing momentum in chRCC research was palpable.

When the room filled for the patient-centric care session, I felt genuinely moved. Surrounded by clinicians I admire, and living heroes to many of us patients, I had to stop myself from offering them a marker to sign my nephrectomy scar (a thought equal parts absurd and sincere). Thankfully for everyone involved, I showed restraint, but to say I was in awe is an understatement. Their brilliance is obvious, but their dedication, heart and humanity hit me hardest.

Stage IV chRCC patient Terri Wight began the session by courageously sharing her story. It brought tears to my eyes, as I mentally traced the parallels between her battle scars and my own.

The Cure vs. Consumed Debate

Dena Battle from KCCURE sparked an important debate with her presentation on “Cure versus Consumed.” She discussed how consuming the disease can be for patients, noting that those who use the word “cured” to describe themselves report being less stressed. She presented survey findings showing that 75% of doctors are hesitant to use the word “cure” with patients, stating stage 1 patients have a 95% cancer-specific survival rate. Her perspective was that both doctors and patients are reluctant to use “cure” to protect themselves and others, but that this may place unnecessary stress on patients who are, in fact, cured. She advocated for more open discussion of the word.

Actionable Insights for Cognitive Health

The most actionable information for me came from neuropsychologist Dr. David Sheppard, who spoke about problems with memory, attention, and fatigue due to treatment. He explained that stress causes brain fatigue in patients and that decreasing stress can improve these cognitive effects. He recommended rewriting fear narratives (which I immediately looked up), relaxation and mindfulness strategies like meditation, and utilizing our social support networks. He also discussed physical fatigue from treatments and recommended physical activity. Methylphenidate was mentioned as having modest evidence for improving fatigue.

Research Highlights for Chromophobe RCC

For sarcomatoid chRCC patients, there was a poster presentation by Dr. Sahil Doshi that analyzed outcomes of 202 metastatic chromophobe RCC patients with and without sarcomatoid features across nine cancer centers. They found that for chRCC patients without sarcomatoid features, outcomes were similar whether or not they used immunotherapy in first-line treatment. However, for those with sarcomatoid features, there was a clear benefit from first-line treatment regimens containing immunotherapy.

Dr. David Gal spoke about his work as a bioengineer and his research on profilin-1’s role in chromophobe RCC. He explained that profilin-1 is a protein inside cells that helps build the cytoskeleton, the internal scaffold that maintains cell shape. Metastatic chromophobe RCC has higher levels of profilin-1, and profilin-1 inhibitors reduce tumor growth when injected into mice. Although still early research, he mentioned it could potentially be a drug target for chRCC in the future.

New Treatment Approaches on the Horizon

A summary of presented chRCC research wouldn’t be complete without mentioning Dr. Lisa Henske’s presentations. She gave two oral presentations specific to chRCC. I found the one on new treatment approaches in chromophobe RCC when first-line therapy fails to be very encouraging. She discussed numerous trials that could be valuable for certain chRCC patients to explore. Inclusion in these trials feels like a real milestone, as chRCC patients have historically been excluded from trials or lumped into basket trials.

First, she discussed the NN3201 C-KIT antibody-drug conjugate trial. This experimental drug combines a targeted antibody that finds cancer cells with the protein C-KIT on their surface and a toxic drug called MMAE that’s directly delivered to the cancer cells. C-KIT is highly expressed in chromophobe RCC, making it a promising target. She noted that this Phase 1 trial is currently available to chromophobe RCC patients at seven facilities.

Next, she mentioned the phase 2 study of the combination tivozanib and nivolumab in non-clear cell patients. She also discussed the memory-like natural killer cell (NK) therapy trial. The treatment involves collecting natural killer cells from the patient’s blood, “training” them in the lab to create memory-like NK cells that can better recognize and kill cancer cells, then infusing the activated NK cells back into the patient along with low-dose IL-2 to help them multiply and stay alive.

Additionally, Dr. Henske talked about what’s coming down the pipeline, including a drug called DT2216 that degrades BCL-XL. This drug has just entered clinical trials for ovarian cancer. Dr. Henske hypothesized that since BCL-XL is highly expressed in chromophobe RCC, it could be a potential therapeutic target to explore in the future.

She also spoke about ferroptosis, a form of regulated cell death, noting that chromophobe RCC may demonstrate the best response to ferroptosis induction out of all human tumors. Healthy cells have ferroptosis suppressor protein inhibitors (FSP1), protective proteins that prevent damaging oxidation and keep cells alive. ChRCC relies heavily on FSP1, and by using a FSP1 inhibitor, cancer cells die through ferroptosis.

Unstoppable Together

The presenters at IKCS left me with a sense that somewhere twinkling between the slides, their thoughts, and discussions, there is reason to be hopeful. I definitely left the conference basking in the IKCS afterglow, but the things that left the biggest impact on me weren’t listed in the symposium guide. They were: the late night chats and laughs with fellow advocates, being reunited with those who’ve stood beside me in the trenches, words of encouragement from other patients, hugs and dinners with doctors who chose to spend their precious time with me, and being part of this community of amazing people that I never wanted to join but am so grateful to have.

I tip my hat to the Kidney Cancer Association (KCA) for providing this opportunity for multidisciplinary collaboration and innovation in our pursuit of a kidney cancer cure. Thank you, KCA, for supporting patients and doctors and for fostering a community that truly allows us to be unstoppable together!