“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 biopsy, the unexpected cause was revealed: stage 4b Thymic Carcinoma.
“When I heard those three words – “You have cancer,” – 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 surgery in an attempt to remove the 13cm mass from his chest. Doctors could only remove 15 per cent of the tumour due to its precarious location between the heart and left lung – which also rendered radiation too risky.
His next step was six rounds of chemotherapy followed by Keytruda, a type of immunotherapy. With 12 rounds costing around $60,000, Noel is having to crowdfund through RCA’s Patient Treatment Fund to help afford it.
“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 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.”
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.
“I’m just so thankful that these support groups exist for my rare cancer. I’m grateful to have met and to keep meeting more people who are diagnosed with similar cancers. Just knowing you’re not alone, that you can talk to others in the same boat; it’s priceless. The support and connection we provide for each other is so good from a mental health perspective, but we can also learn from each other’s experiences, including information we may not have known about. I think it’s amazing.”
“If you don’t have good mental health and try to shut everyone out, I think that’s when things can get dark. It’s so important to keep reaching out, to keep talking, and to know you’re not alone. Talking to people in remission also gives me hope – their message is to never give up. I’m so grateful I have a strong support network, and that it includes RCA.”
Positive and proactive, Noel is researching his next treatment option.
“I have asked people a lot of questions and have read and researched a lot. I want a plan of attack for what else we can do, which is not easy given there isn’t enough research on my type of cancer, and options are limited financially because it’s rare. But I believe there is always something to try. You just have to find your fit with what drug works for your cancer, and for your body. I feel hopeful,” he says.
