“When I was diagnosed, we didn’t know what to do, who to contact, who to ask for help, or where to look for research. It’s like this awful diagnosis was just dropped in our lap and we were left to figure it out. It all happened so quickly, but with such limited information. We felt very overwhelmed and a bit lost.”
Last February, 35-year-old Noel’s world was turned upside down.
“I was working hard to chip away at my goals, raising my son to be the best version of himself that he can be, and making wedding plans with my new fiancé. And then I developed this cough that I just couldn’t shake, and would cause me to pass out,” Noel recalls.
After self-admitting to hospital and undergoing a CT scan, PET scan and biopsyremoval of a section of tissue to analyse for cancer cells, the unexpected cause was revealed: stage 4b Thymic Carcinomacancer arising from tissues that line organs.
Noel and his wife, Cheyanne
“When I heard those three words – “You have cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs,” – it was gut-wrenching. I felt like I had been hit by a freight train with no signs of it slowing down. I felt worry, shock, fear and overwhelm, all at once. It’s like my hopes, dreams and plans for the future were shattered within seconds.”
Within a week Noel was in urgent surgerytreatment involving removal of cancerous tissue and/or tumours and a margin of healthy tissue around it to reduce recurrence in an attempt to remove the 13cm massa growth of cells that come together to make a lump, may or may not be cancer from his chest. Doctors could only remove 15 per cent of the tumoura tissue mass that forms from groups of unhealthy cells due to its precarious location between the heart and left lung – which also rendered radiation too risky.
His next step was six rounds of chemotherapya cancer treatment that uses drugs to kill or slow the growth of cancer cells, while minimising damage to healthy cells followed by Keytruda, a type of immunotherapya treatment that uses a person's immune system to fight cancer. With 12 rounds costing around $60,000, Noel is having to crowdfund through RCA’s Patient Treatment Fund to help afford it.
Noel in hospital with his wife, Cheyanne
“The treatment is very expensive, and I can’t believe that it’s not listed on the PBS for rare cancers, but it’s covered for people with a more common cancer. It just seems wrong,” he reflects.
Noel says that before he was diagnosed, he had no idea of the challenges that rare cancer patients had to face.
“When I was diagnosed, we didn’t know what to do, who to contact, who to ask for help, or where to look for research. It’s like this awful diagnosisthe process of identifying a disease based on signs and symptoms, patient history and medical test results was just dropped in our lap and we were left to figure it out. It all happened so quickly, but with such limited information. We felt very overwhelmed and a bit lost.”
Noel’s Family, Cheyanne and Mateo, at the Zoo
A carer in a global thymoma cancer support group recommended Noel contact RCA for guidance.
“We reached out to RCA right away, and I would strongly advise anyone else with a rare cancer do the same. Having them as part of our support network has been amazing.”
Noel is now a member of the online RCA Thymoma Cancer Support Group.