Curiosity Saved the Cat

Written By Chris Carneal

No doubt you’ve heard the saying, “Curiosity killed the cat.” Not for Bill. For him, curiosity sparked innovative thinking. 

How Bill’s Quest Took Him Far Beyond His Diagnosis

Bill is a shining example of what a Smart Patients member can become: a confident self-advocate and an expert in their own care. Bill started by simply questioning whether there was an underlying interconnectedness to his independent health episodes. 

Fueled by the desire not to sit back and accept a diagnosis that didn’t fall within the “standard of care,” Bill used technology, outside-the-box thinking, and data analysis to seek alternatives to understand the diagnosis and find different treatment approaches. 

His story unfolds in six chapters - each one a testament to the power of curiosity and to the transformation that happens when patients become their own best advocates.

Chapter One: When Symptoms Don’t Add Up

In late 2013, after a plane trip from Baltimore, Bill was diagnosed with a DVT - a deep-vein thrombosis. He was placed on blood thinners - the standard treatment to eliminate a DVT and prevent future ones.

This required rethinking less than three months later. Bill developed another DVT while still on anticoagulants. That shouldn't have happened. Tests were done to find out why, and imaging explored whether clots had migrated to his lungs or brain. 

Unfortunately, the scans revealed much bigger problems: CT of his chest and abdomen discovered a mass in his left kidney, and MRI of his brain showed a brain tumor - a meningioma. 

Without a biopsy, Bill's first diagnosis said he had renal cell carcinoma (RCC) and the meningioma was probably a metastasis. Further tests revealed the meningioma was an independent finding that did not require immediate action.

Chapter Two: When the Path Is Unclear

At home, Bill had a total left nephrectomy and learned he had papillary kidney cancer (pRCC). It's rare, affecting only one out of ten kidney cancer patients. His doctor told him that while clear cell RCC had a recognized standard of care, papillary didn’t. Bill began to research clinical trials and was disappointed to learn that very few accept patients with pRCC. 

He persisted and found the EVEREST trial. But before deciding whether this was right for him, he took the additional step of seeking an opinion from a highly recommended surgeon at the University of California, San Francisco (UCSF). 

More than that, however - and this is very much a part of Bill's character! - he sought out 12 more. With 13 varying opinions and a deadline looming, he studied the situation from every perspective. Ultimately, he decided to forgo enrolling in EVEREST due to last-minute data he gathered at the 2014 American Society of Clinical Oncology conference (ASCO). He made an informed decision, although it also felt a little like rolling the dice at a craps table.

Chapter Three: Success, Questions, and the Shift

Bill's nephrectomy had been successful, and his scans showed no evidence of disease. Despite this good news, he was aware there was a high risk of recurrence. So, Bill being Bill, he dove deeper and became an advocate. 

He continued asking questions of fellow patients, attended conferences with kidney cancer experts, and continually armed himself with a list of well-informed questions about disease progression, treatments, precision medicine, biomarkers, genetics, and genomics. 

During this time, Bill joined Smart Patients as a learner. Like many other members, he read posts, dipped his toes into the water with a few replies, and then dove in headfirst to become the respected resource, supporter, and thought leader he is today. He emerged as a trusted voice who has built a hub for others facing rare kidney cancers. 

With a fellow Smart Patient and several clinicians including Dr. James Hsieh,  he created rarekidneycancer.org to share his research, connections to centers of excellence, news, and information about clinical trials for rare kidney cancers.

Chapter Four: Hacking Cancer

Even though scans of his kidney remained clear for the next few years, Bill still wondered about the lingering threat of recurrence. But he didn’t waste his time on, “Why me?” Instead, he asked, “What about me specifically?” 

He had an idea: Why not use his data and connections to sponsor a hackathon? A health hackathon is an extended session of medical brainstorming, where normally separated experts work together to develop new answers using real data and creative thinking. In 2018 he invited 17 teams of bioinformaticians, cancer biologists, doctors, data scientists, and a range of other researchers to essentially serve as a gamified tumor board. This collection of 80 researchers applied advanced algorithmic analysis to Bill's data to find effective treatment paths tailored to his unique conditions. 

One team stood out to him. They went beyond analyzing his DNA by comparing it to an RNA database. This later enabled them to match his RNA sequencing to genes of interest for future treatments.

With this new information, Bill had compelling data on how to approach treatment if the cancer recurs. Of course, he also hoped he would never need to apply that information. This hackathon also ran data reassuring him that not entering the EVEREST trial had been the right choice for him.

Chapter Five: AI Technology vs. Tried and True 

In 2022, after experiencing concerning symptoms, Bill discovered his brain tumor had begun growing. (Meningiomas can grow and cause problems even though most are not cancerous.) Bill used what he had learned from his rare kidney cancer to determine which treatment to use to stop the growth. He started a new investigation with the same tools and approaches. 

Due to the tumor’s location, surgery was not an option. Bill and his medical team had to decide between two types of radiation treatment: traditional photon therapy or the newer proton therapy. 

To decide, Bill again sought guidance from 13 specialists and used data aggregation. Some specialists dealt solely with proton therapy, others only with photon therapy, and some with both. Rather than relying on information about which method they were more familiar with, he made his decision based on a clinician who was familiar with both treatments and evaluated risks and benefits specific to him. Bill decided photon therapy was his preferred option. 

Meanwhile, with the decision made and treatment underway, Bill was learning more about AI. He wondered, “Did I make the right decision?” 

He asked two different AI programs to make treatment recommendations. They both selected proton therapy. However, they didn’t have access to his complete electronic medical records, and the recommendations just didn't feel like the right fit. 

Ultimately, he decided the clinician with information about both types of treatments and a personalized approach offered him the best insights to make a confident decision. While still deeply interested in bringing AI into expert medical consultations, Bill feels he was right to go with the human thinker whose answer drew on fuller information and direct experience with the two therapies.

Chapter Six: Ongoing Crowd Wisdom

Today, while looking with hope toward the growth and improvement of technology, Bill still believes in crowd-sourcing answers. Sharing experiences, asking questions, having hope, and taking a personalized approach to care have all been huge steps in Bill’s journey. 

"Patients can never afford to stop asking questions, especially if they have a rare disease," Bill noted in our recent interview. "That's one thing that makes Smart Patients so special. It's a great place to ask questions and get a variety of perspectives."

Ten years ago, Bill said, “I used to think that technology would be THE key to my survival. In fact, another key has been the common decency of Johns Hopkins University hospitalists and nurses who took time to explain my disease to me, the integrity of UCSF physicians and nurses who engage in full disclosure, and the courtesy of MD Anderson researchers who take time to respond to people who are not even their patients.” 

On top of the latest information, great medical care, and innovation, Bill has learned that kindness, honesty, caring, and genuine humanity are vital components in reaching patients with the best medicine has to offer. On Smart Patients, experienced patients and their family members share these gifts with others.

Join Smart Patients to connect with people like Bill in a community that cares and that offers both research and lived experience for improving circumstances. Feel heard, understood, and supported. Everyone’s journey is unique, but we all benefit from community and curiosity.

Chris Carneal
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