Katie Johnson is in her 30s and diagnosed with terminal cancer she said doctors misdiagnosed for years.
"I was told I have stage four terminal cancer," said Johnson. "And now you have 25 lesions in your liver and we can’t operate."
She wanted to share her story with 5 On Your Side’s Monica Laliberte as a lesson for others to push for answers.
The diagnosis came in 2019, four years after Katie Johnson first started asking doctors for answers.
"In 2015 I went and said, you know, something’s not right," said Johnson. "They just kept saying, oh, it’s gotta be something in your stomach."
She went through many tests.
"They did the colonoscopy and the upper endoscopies. Can’t tell you how many of those I’ve had," she said.
Johnson says a doctor diagnosed two lesions.
"I was simply told you’re of child-bearing age. You’re on birth control. It’s just a cyst. These are cysts," said Johnson.
She researched her symptoms which included abdominal pain, GI problems, flushing of her face and says she even flagged the cancer she was eventually diagnosed with.
It’s now metastatic neuroendocrine cancer.
"Just disbelief, you know, and really, to be honest with you, anger. Because I specifically asked about that exact type of cancer," said Johnson. "They could have operated and they could have removed those, what they thought were cysts. I mean, to me, the system had failed me."
Johnson says that’s when she learned the importance of being your own advocate.
"I’m not saying get on, you know, WebMD and … become a hypochondriac, but I am saying, you know your body and you know if something’s wrong," she said.
Johnson is now trying new treatments, hoping for positive results despite the battle ahead.
"I’m not going to give up, I’m not going say 'this is it' and we’re only just going to accept palliative care. That’s not it for me," she said. "Don’t take no for an answer, cause it’s your body."
Johnson is a fighter for sure.
5 On Your Side asked how is she not angry about all of this, she admits she was, but realized she can’t waste energy on that. She needs it for the battle against cancer.
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