Winhan was living a busy life in Toronto with his wife and 2 children when he developed a cough that would not go away. He visited his doctor expecting a simple answer, but after listening to his lungs, his doctor sent him for an x-ray.
“When my doctor called me in and asked my daughter to wait outside, I knew something was wrong. I’d brought her thinking it was just a cough.”
At 42, Winhan was told he had stage 4 lung cancer.
The diagnosis was devastating. His children were only 8 and 10 years old, and he and his wife did not know how to tell them. Winhan struggled to cope with the news himself. Even now, he says the diagnosis still feels hard to believe.
The day before my diagnosis, I played 2 hours of hockey. I thought I’d just get some medicine and be fine.
Dealing with the cost of cancer
Winhan’s cancer was ALK-positive, which meant he could try targeted therapy, a treatment that can be easier on the body than chemotherapy.
But getting access to this treatment was not easy.
At first, Winhan was told it would be covered by his insurance. However, 2 days later, he learned the approval had been reversed. Without coverage, it would cost him $10,000 out of pocket.
The cost put huge pressure on his family.
“We were really looking at all our resources and what we would have to do to afford the treatment. We have a house with a mortgage, so we thought about refinancing it. We do have savings, but we didn’t want to take away from that. We even thought of starting a GoFundMe.”
“Basically, everything went through my mind in terms of thinking how we were going to make this happen, so I could live.”
Winhan ended up having to pay for the first month himself while he and his doctor kept pushing for coverage. Eventually, he was paid back, but the experience left a lasting impact.
The cost of cancer is always on my mind. It's not like it ever goes away. And then I wonder what I used to think of, before I got diagnosed.
The targeted therapy helped Winhan keep up with much of his daily life. Over time, some drugs stopped working, so he had to switch treatments. One worked for 3 years. Another worked for only 6 months. Each new treatment has brought new stress.
“It hasn't been an easy path, switching treatments and figuring out funding for all the drugs, but we've always managed to make it happen. Some people are not as lucky.”
Finding hope with a clinical trial
Luckily, in 2024, Winhan found out about a clinical trial that allowed him to receive treatment without having to pay $12,000 a month.
Winhan is now 2 years into his clinical trial and gets scans every 2 months. He continues to enjoy an active lifestyle, playing hockey and regularly getting together with friends to play tennis.
Ten years after his diagnosis, Winhan feels like he’s living a regular life. He has yet to tell his mother about his cancer, trying to prevent her from worrying unless things take a worse turn.
“Cancer has never held me back from doing the things I want to do, even travelling. I live life and do the things I want to do.”
“If I didn't get diagnosed with cancer, then I might not have travelled for as long, or I might not have spent as much money on these experiences for myself. It’s almost like you have more free will. You're not holding back as much.”
Becoming a voice for change
Winhan’s experience has made him a strong advocate for better access to cancer drugs.
Since his diagnosis, he’s learned that some medications might have been covered by his insurance, but because he tried other treatments, he no longer qualifies. This means he will never access certain drugs that could potentially lengthen his life.
Winhan also says that if he ever needs chemotherapy, the side effects could be much harder on his body, meaning time away from work for both him and his wife and creating financial strain for their family.
That's why Winhan wants people to know there may be other treatment options available that can help them maintain their quality of life and reduce financial stress.
“Going through cancer, you see people who just listen to their oncologist and don’t ask questions. There could be better treatment for their type of cancer, but they don’t really advocate for themselves. That’s why I want to share my story, to help others.”
In 2024, Winhan spoke at the national summit for the Pan-Canadian Lung Cancer Action Plan. For Winhan, it was a chance to help create change for future patients and help health experts better understand life with lung cancer.
“As a young, non-smoking Asian man, I’m not the ‘typical’ face of lung cancer. I have heard ALK-positive lung cancer often shows up in young Asian people, but I’ve met people of all races and ages. It really can happen to anyone with lungs.”
A path forward
Today, Winhan continues to share his story to help others with their own cancer experiences and highlight the importance of funding lung cancer research.
November is Lung Cancer Awareness Month, a chance to raise awareness about the challenges and stigma faced by people living with lung cancer and support life-saving cancer research. Together, we can change the future of lung cancer in Canada.
Lung cancer doesn’t discriminate by age, race, or lifestyle. But with the right treatment, people can continue to live meaningful lives for years.
Help create a future without cancer
With support from readers like you, we can continue to make a meaningful impact for people affected by cancer.
We are determined to increase survival, stop cancer before it starts, and improve lives. But we can’t do it without you.
If everyone reading this gave just $5, we could achieve our goal this month to fund the most promising research, compassionate support and transformative advocacy. Please give today because every contribution counts. Thank you.