A Journey to Diagnosis: One Man’s Fight for Answers
In May 2024, what started as a routine physical turned into the beginning of an unexpected and difficult journey for Oz Shalmoni. His wife Shelley had been urging him to get a check-up, so he went to see his family doctor. During the exam, he mentioned a spot just below his knee that looked like a large mosquito bite. It had been there for a while, and he was beginning to get concerned. The doctor took a look and reassured him that it was likely nothing serious, but to be safe, she prescribed antibiotics and scheduled a follow-up appointment in three weeks.
Three weeks later, he returned to her office. The spot was still there, unchanged. She decided to take a more direct approach and cut it open to see if there was an infection underneath. But there was nothing—just blood. No pus, no drainage. At this point, she ordered an ultrasound of his leg and pelvis. The results were mostly inconclusive, but a note in the report suggested a biopsy might be warranted. At the time, he still wasn’t too worried.
Then, about a week later, he noticed new lesions forming on his shin. They started getting worse, quickly becoming painful and inflamed. Concerned, he went to the emergency room of a nearby hospital. The doctor there was just as uncertain as his family doctor had been. He was put on an IV antibiotic and prescribed two additional oral antibiotics. But once again, nothing changed—if anything, it was getting worse.
At this point, his wife insisted that they go to Sunnybrook Hospital - one of the best in their area. They hoped that maybe someone there had seen something like this before. At the emergency room, a young doctor examined him but admitted he didn’t know what it was. He took some photos and sent them to the hospital’s resident dermatologist. The dermatologist’s response was straightforward: he needed a biopsy as soon as possible.
Waiting to see a Dermatologist
What followed was another roadblock. The hospital didn’t refer Oz to a dermatologist directly. Instead, he was told to find one himself. He and Shelley began calling every dermatologist they could find, but most had wait times of four to six months. They couldn’t afford to wait that long. Finally, an administrator at Sunnybrook mentioned a dermatologist who had recently opened his own practice. Since he was new, he might have more availability. They called, and thankfully, the dermatologist agreed to see Oz right away.
Even then, the uncertainty continued. The dermatologist wasn’t sure what he was looking at either. He speculated it could be some type of bacterial infection but recommended a biopsy just to be sure. Oz underwent the biopsy, but the wait for results stretched on for 3 - 4 weeks. He and Shelley repeatedly called the office, asking if the results had come in, but they heard nothing.
Then, on a Friday evening around 5 PM, his phone rang. It was the dermatologist. He got straight to the point: “I’m sorry to tell you this, but it’s cancer. It’s a type of skin cancer, but we’re not yet sure if it’s Merkel cell carcinoma.”
Oz and Shelley barely had time to process the news before Oz was referred to an oncology team at Sunnybrook. His care team consisted of Dr. Petrella, his oncologist, Dr. Barnes, his radiologist, and Dr. Wright, his surgeon. By early September, they confirmed it—he had Merkel cell carcinoma, a rare and aggressive form of skin cancer. Scans revealed that the cancer had spread to his groin lymph nodes.
Treatment Failed
Treatment started quickly. He underwent five rounds of radiation, followed by immunotherapy. The first drug they tried, Avelumab, triggered a severe allergic reaction. He experienced intense back and chest pain during the infusion. They stopped the treatment immediately and gave him corticosteroids and antihistamines to counteract the reaction. They tried again, pre-medicating him beforehand, but the reaction persisted. After a third failed attempt, Dr. Petrella told him it was too dangerous to continue. At this point, Oz and Shelley entered another battle—finding an alternative treatment.
Insurmountable Costs
Oz’s doctor’s agreed that Keytruda, an immunotherapy drug commonly used in the U.S. for Merkel cell carcinoma but not yet approved for that use in Canada, was his best option. But it came with an unbelievable price tag. Just one dose would cost the couple almost $10,000. Furthermore, a dose was administered in 3-week intervals and could require 2 years of treatment.
For seven weeks, they searched for another option. Shelley tirelessly called pharmaceutical companies, cancer centres, and doctors across North America, looking for assistance. Eventually, out of sheer luck, someone put them in touch with Save Your Skin Foundation, who were able to advocate on their behalf.
Finally, Merck Canada agreed to provide Oz with four free doses of Keytruda. It was a relief to finally have a treatment option, but the couple couldn’t help but feel frustrated. Why had they needed to fight so hard just to get access to a potentially life-saving drug? The bureaucracy around drug approvals and insurance coverage made an already difficult situation even worse.
As of now, Oz has completed his third treatment with Keytruda, with his fourth scheduled soon. It’s still too early to tell if it’s working, but he remains hopeful. The delays, misdiagnoses, and the sheer difficulty of accessing treatment have been exhausting. But through it all, Shelley’s persistence and the support of others have kept him going.
He doesn’t know what the next step will be, but he does know this: The healthcare system needs to do better. No one should have to wait months just to see a dermatologist or fight for weeks to access a treatment that could save their life. His journey isn’t over yet, but he hopes that by sharing his story, he can help make a difference for others facing similar battles.
