After over a year of doctor's visits, 29-year-old Katie Coleman was diagnosed with a rare form of kidney cancer after initially being told she was too young.
In 2020, Katie Coleman was diagnosed with stage 4 kidney cancer after having her symptoms repeatedly dismissed by doctors.
Coleman told the "Today" show that she knew something was wrong with her body. “I just knew it deep down. I had sustained high blood pressure and a rapid heart rate, so I went to eight different doctors, did all kinds of tests and everybody just kept telling me I had anxiety,” she said.
Coleman spent almost two years searching for explanations and being ignored, adding her to the long list of women who have their medical conditions dismissed.
“I’ve had anxiety throughout my life, but this was different and I tried to communicate that, but I kept being put on anti-anxiety medications.”
Coleman told the outlet that prior to this situation, she hadn’t had any health issues, and two doctors told her she was too young to have cancer. “It made me feel like a hypochondriac,” she said.
According to the outlet, the software developer lost weight in an attempt to fix her issues, walking several miles a day and changing her diet.
“When I lost that weight, I started to feel a hard mass in my upper right abdomen,” she said.
Coleman went to an urgent care and she said a nurse practitioner advised her to go to the ER.
“It was December 2020, right in the peak of COVID-19, so I was super nervous to go to the ER, but I went,” she told the outlet.
Coleman shared that when the hospital ran an ultrasound and a CT scan, they saw an almost 5-inch mass on her kidney and several tumors in her liver.
“When a doctor came in to deliver the news on New Year’s Eve, my husband instantly started crying,” she said.
“We had just gotten married in October. We were newlyweds. Nobody expects that kind of diagnosis to come two months after you get married.”
Coleman shared that, though being terrified, she felt relief because her experience and symptoms were finally being validated and believed.
The then 29-year-old’s official diagnosis was a metastatic oncocytoma, a rare type of renal cell carcinoma.
Coleman shared that the oncocytoma spreading to her liver moved her into stage 4 of the cancer.
“The type of cancer I have, is 'exceedingly rare' (words straight from my path report). I’m the only known living case in the US with under 10 case reports worldwide in history,” she shared on her Facebook page.
She shared in her post that searching for information and other patients with a diagnosis like her came up empty, and that left her feeling alone and scared.
“So in that moment, I vowed to share everything about my case publicly. So that in the unlikely event anyone else ever found themselves in my shoes one day - they’d have another case to look to & they wouldn’t have to feel so alone,” she said.
“When I first got diagnosed, surgery wasn’t an option. But the tumor seemed to be slow-growing and six months into my treatment, the National Cancer Institute decided to take a chance on me and operate,” Coleman told the outlet.
In 2021, doctors removed Coleman’s right kidney, cut out several pieces and did ablations on her liver, and currently, the young woman says that the remaining tumors in her liver are stable and she’s presently on surveillance.
“Today, I’m feeling great. I actually feel the best I’ve felt in my entire life, which is really weird to say with stage 4 cancer,” she said.
Coleman says that her reason for being so public with her diagnosis felt worth it after sharing her story with "Today."
“...last night as I laid in bed & regoogled the same search I ran the night I got diagnosed, I was left with tears streaming down my face. 1.5 yrs of vulnerability, discomfort & doubt but ‘metastatic oncocytoma’ no longer comes up empty,” she wrote.
“I hope no one ever finds themselves in my shoes someday but if they do, I hope they find this & they don’t feel so alone. Hopefully there will be a case report on my case some day, so the blueprint can be upgraded from these stick figures I’ve drawn. But until then I’ll just keep doing my thing over here.”
