(FOX 13) - "I get there just to find they don't accept it. Then some of these appointments I went to, I got turned down in the office," he added.
"I know the more time that lapses the worse this gets, and the bigger the tumors grow the more it spreads."
Florida has reformed state-run health care for the poor, and patients like Cleveland Johnson say it's making it harder to find doctors who will treat them.
The federal government offered billions of dollars to expand Medicaid, but Florida did not accept the money. Governor Scott wavered on the Medicaid expansion and sent mixed signals before rejecting it in 2015. He said it would put a growing strain on the state budget because Florida would have to pick up a rising share of the costs in future years.
Instead of expanding Medicaid, Florida reeled it in by moved patients into private HMOs (which pay physicians comparatively less than other plans).
That's why Cleveland Johnson and other say they've struggled to find specialists who accept their insurance. After months of getting the runaround, he finally found a doctor who agreed to see him, but he fears too much time may have passed for him or others facing the same challenge.
Florida reformed the state's Medicaid system to streamline it and save money. But some patients say they're struggling to find doctors - particularly specialists - who will accept the state-run insurance, leaving them in a bind.
Cleveland Johnson took his toddler daughter Leilani to an Orlando resort to celebrate Christmas last year. But he had to leave early and go to an emergency room because of severe stomach pain. That's when he learned he has pancreatic cancer.
"It's hard to think about the fact you may die and leave a child behind at a young age," he said. "Since the day I've had her, I've worked hard to give her the best possible life I can give here. Now it's like whole life has been turned upside down"
He has health care through Medicaid, but for months he could not find a specialist who would accept it as the cancer spread.
He said he worked through seven pages of doctors who are listed as physicians who accept Florida Medicaid. But he said none would take him as a patient. He said most of them told him they no longer accept Medicaid and that the list he was given had not been updated to reflect that.
He says he understand why state leaders changed Medicaid to save money, but he wonders if they realize how the changes are taking a toll on patients who need help the most.
"And now it's like I feel so helpless… it's heart-breaking because I know I'm not the only person going through that. If I'm going through it there are probably thousands of other people out there who go through the same thing, and it's not right."