Katie Coleman was diagnosed with a rare form of kidney cancer in 2020, when she was 29. She had had to go to doctors for a year and a half to find out what was going on before finally getting an answer. Coleman, a software developer who recently started a new job in Austin, Texas, decided to be candid about her diagnosis when she interviewed for the position. She shared her story with TODAY.
Before this happened, I had not had any health problems. I didn’t even have a GP, which I look back on and regret.
I knew something was wrong with my body – I just knew it deep down. I had high blood pressure and a fast heart rate, so I went to eight different doctors, did all kinds of tests, and everyone kept saying I had anxiety. Two doctors told me I was too young for cancer when I asked. It made me feel like a hypochondriac.
I’ve had anxiety all my life, but this was different and I tried to convey that, but I kept getting anti-anxiety meds.
When I couldn’t get anyone to take me seriously, I deliberately started losing weight to see if that could improve my health and solve the problem. I lost 50 pounds by walking two to 10 miles a day and eating healthy. As I lost that weight, I started to feel a hard mass in my upper right abdomen.
It wasn’t a lump. The best way I can describe it is that it felt like I had a six pack on that side, but I don’t have a six pack by any means. It didn’t hurt me, I just felt it. So I went to an emergency room and the nurse practitioner assured me it was a perfectly valid reason to go to the ER.
It was December 2020, right at the height of COVID-19, so I was super nervous about going to the emergency room, but I went. They did an ultrasound and a CT scan and saw a mass almost 5 inches on my kidney and several tumors in my liver.
When a doctor came in to deliver the news on New Year’s Eve, my husband immediately began to cry. We were just married in October. We were honeymooners. Nobody expects a diagnosis like that two months after getting married.
But even though it was a terrifying diagnosis, I almost felt a sense of relief because for once, I had someone sitting across from me who believed me and there was a reason I felt terrible.
My official diagnosis is a rare type of renal cell carcinoma, a metastatic oncocytoma. Oncocytomas should never spread, but mine went to my liver and that turned it into stage 4 kidney cancer.
When I was first diagnosed, surgery was not an option. But the tumor seemed to be growing slowly, and six months after my treatment, the National Cancer Institute decided to take the risk and operate on me.
In June 2021, doctors removed my right kidney and did several wedge resections of my liver – cutting out several pieces – and then also burned a few tumors in my liver. In November I had another ablation.
Since then, I’ve only been actively monitoring. I still have tumors in my liver, but they have been stable for a while. I have scans at the end of June.
I’m a software developer, so it drove me crazy how difficult it is to navigate the system as a patient. I made my own app to keep track of my doctors, notes, appointments and vital signs in one place.
I wasn’t looking for a new job, but I decided to consider one at a digital health space company. That’s exactly what happened: a recruiter got in touch.
I had to consider whether to disclose my diagnosis or not, and I ended up disclosing it right out of the gate. I told the recruiter I had cancer and I started the process. I would only switch to a new employer if I knew that the new employer supported me.
I was in a very unique situation because I didn’t need a job. Several people told me not to disclose my diagnosis – that I would be discriminated against, which is a very valid concern. But it was a personal decision and a calculated risk. My new employer was absolutely incredible.
My cancer is so rare that there really isn’t a prognosis. Nobody knows what to expect. I don’t blame the early doctors for their pre-diagnosis comments — to them I looked like an anxious patient. They got off their training and the box I then fell into.
Today I feel great. I actually feel the best I’ve felt in my entire life, which is really weird to say with stage 4 cancer. I am very grateful for how long I have felt this way.
This interview has been edited and abbreviated for clarity.