Chad Kimbler was only 28 years old when he was diagnosed with uveal melanoma, a rare cancer of the eye. Known as the “silent killer” because of its aggressive behavior and quick-moving metastatic spread, melanoma wasn’t the diagnosis Chad had been expecting after visiting his ophthalmologist. “I was due for an eye exam because I needed my contact prescription renewed, but I knew something was different about my vision; it didn’t seem right,” Chad recalled in a recent conversation.
After a four-hour appointment—with an extended waiting period for dilation—the doctor examined the back of Chad’s eye with an optimal scope. “When he turned the lights back on, something happened that had never happened to me before: I saw black out of my left eye, which gave me a shock,” he explained. The doctor told Chad he had macular degeneration due to leaky blood vessels under the retina. “You’re typically well into your seventies or eighties by the time you get it, so I thought that was odd.”
Still dealing with the side effects from direct injections to his eye, Chad decided to see a different specialist. “I ended up going to UCLA after pressure from friends and family. I had no medical records with me. I told them the same story and they were shocked that I was there. They knew right away that it was not macular degeneration. I went in there for a second opinion not knowing what to expect, but I was there for six hours and left with a cancer diagnosis,” he said.
Patients with rare cancers like uveal melanoma are often misdiagnosed due to a lack of awareness about their disease. Chad had begun seeing an ophthalmologist back in 2009 and in 2013 he needed surgery to help correct his vision. The procedure helped restore his vision back to 20/20, but in 2015 he was correctly diagnosed with uveal melanoma. Soon after, Chad had his eye completely removed. “Once you start damaging the anatomy of the eye it’s likely not going to recover,” Chad explained; “The treatment options are plaque radiation, sort of like a penny that’s sewn to your eye with radiation on it, or a proton beam. Or they can remove your eye. I said I’d rather just cut it out and get it over with.”
While Chad was able to have the cancer removed from his body, he wasn’t able to completely remove it from his life. Three months later, Chad’s sister was diagnosed with cholangiocarcinoma at only 35 years of age and a pattern started to emerge. Through genetic testing, Chad’s oncologist discovered a BAP1 germline mutation. “My mom passed away in 2005 from kidney cancer, so it’s inferred that she has the mutation,” Chad said: “There’s no genetic proof, but there aren’t many people all getting cancer this young. My mom was only in her forties when she was diagnosed.” Six months after her diagnosis, his sister passed away.
It was while acting as her caregiver that Chad discovered Ciitizen and the importance of keeping your health records in your control. “Because uveal melanoma is so rare, we have to lug our records around with us everywhere we go,” he explained; “There are only about fifty centers in the U.S. that treat it, and only about twenty that treat metastatic uveal melanoma.” Every six months, Chad gets an MRI done to make sure the disease hasn’t spread to other parts of his body.
“Thinking about the metastatic route, having your records is almost a requirement,” Chad continued; “You have to advocate for yourself and have everything organized if you want to get through the system quickly. You need to be able to send your records to the doctors in real time without having to wait for your hospital to do it for you.”
Chad is currently not metastatic, but with the rarity of his condition combined with his family history, he’s making sure his data is in his control.