Katie Coleman on her wedding day.
Image credit: Zandra Barriga
Katie Coleman is driven. If something doesn’t sit right with the 15-year veteran of the motorsports industry, she doesn’t stop until it does.
Katie knew something was wrong after struggling with heart rate and blood pressure issues for a year and a half. She made multiple visits to the emergency room to determine the cause of these problems, only to be told that she suffered from anxiety and was too young to have cancer.
She embarked on a healthier lifestyle to try and manage her symptoms, and in the process noticed a mass in her upper right abdomen. On New Year’s Eve, 2020, at 29 years old, Katie was diagnosed with stage IV kidney cancer.
Katie has oncocytoma, a typically benign tumor, which makes up 15 to 20 percent of kidney tumors according to Mark W. Ball, M.D., assistant research physician in the Urologic Oncology Branch (UOB), and one of Katie’s doctors. What makes Katie’s case rare is that hers spread.
Due to the rarity of her tumor, it took some time for Katie to get her first diagnosis: an unclassified oncocytic neoplasm that looked exactly like an oncocytoma. The difference between an oncocytoma and oncocytic neoplasm is subtle and has to do with how clusters of cells are arranged. “We say an oncocytoma is usually a benign mimicker of a kidney cancer – there’s no risk of spread,” Ball says. “The rare thing here is that hers did.”
Oncocytomas that spread are so rare that Katie’s is likely the only known case in the United States and one of only a handful throughout the world. While she felt very alone after her diagnosis, she quickly learned to advocate for herself and seek out information.
“My experience made me wonder how many other people end up in my shoes, where they’ve accepted a diagnosis only to learn later it was different and that there were different treatment options available. So, I decided in that moment that I was going to share absolutely all my medical records, all of my story, publicly on social media. I never wanted someone to search like I did and find nothing,” she said.
From day one, Katie wanted her primary tumor removed, but she was met with continual roadblocks due to the rarity of her disease and the potential high risks that come with surgery. So, she was put on systemic treatment (drugs that travel through the bloodstream) until she came to CCR. Katie found CCR through Driven to Cure, a patient advocacy group dedicated to raising awareness about rare kidney cancers. They connected her with Marston Linehan, M.D., chief of the UOB, whose protocol she would soon join.
Dr. Ball learned of Katie’s case from KCCURE, a non-profit group that advocates for kidney cancer research and awareness, when one of its members made an inquiry on Katie’s behalf. “My immediate thought was ‘I don’t think that chemotherapy will be a long-term lasting option, so I wonder if there is a surgical option.’ And after we saw the scans we thought, ‘Yes, there is,’” he said. Because the tumors in Katie’s liver had clear borders, it was likely that surgeons could more easily operate, with the potential of removing the tumors in their entirety.
When Katie got the call about her surgery, she did a little dance in her office. Dr. Ball worked with Jonathan M. Hernandez, M.D., investigator in the Surgical Oncology Program, to perform Katie’s procedure. The two often collaborate, something Ball considers to be one of the most unique aspects of CCR.
“We get to see rare things and are able to collaborate with people from different specialties to make something happen that others may not think is possible. That was certainly the case here,” said Ball.
The team for Katie’s surgery was large and multidisciplinary. “NIH’s approach to everything is extremely thorough,” Katie said, a point that Dr. Ball echoes. “It helped reassure me that each doctor I met with told me they have never prepared for a case quite as much as they prepared for mine,” she said.
Katie had her surgery at the end of June 2021 and will continue to meet with her doctors at CCR to discuss the next steps in her treatment. To this day, one of her biggest pieces of advice is to lean on patient advocates and foundations for help. She continues to share her journey on social media and encourages patients to be their own advocates.
