Lung Cancer Patient, Ben Wilson shares his story
Lung Cancer Patient Advocate Ben Wilson of Tuakau (South of Auckland) is a funeral director and celebrant.
Ben is 39 years of age. He lives with his fiancée Emma. Together they share 4 children; Logan, Grace, Isaac and Peyton. Ben is the Deputy Chief Fire Officer for the Tuakau Volunteer Fire Brigade.
Grateful thanks to Ben Wilson for choosing to share his story during a Q&A with Philip Hope from Lung Foundation New Zealand.
What stage is your condition and what type of treatment are you receiving?
I have stage 4 Lung Cancer with the ALK positive rearrangement. I have had radiotherapy treatment and I am on a second generation TKI called Alectinib.
What were the symptoms of your lung cancer and how long did it take to get diagnosed?
I had a dry cough for approximately 7 months. I was diagnosed the first week of 2025 (a week after I proposed to Emma!)
I had seen the doctors in October 2024 for an ear issue and mentioned my cough, but did not think too much of it at the time and was told my lungs sounded fine.
I then returned to the doctors in December 2024 as the cough was lingering. I was put on an inhaler and sent for a chest x-ray. I was then told the chest x ray has come back and I had bronchitis. I did find it slightly odd I had bronchitis all of that time as I felt I had no other symptoms. The inhalers and antibiotics I was prescribed made no difference and Emma said I really should go back to the doctor. I told them I don’t think I have bronchitis and a blood test was ordered. I was then sent to hospital for further assessment and upon having a CT scan, it showed I had a large tumour on my left lung with metastasis to my right lung, lymph nodes, bones, adrenal gland, spine and spleen.
How do you feel today?
I feel fine and I am still working, enjoying time with Emma and the kids as well as carrying out my role as the Deputy Chief of the brigade. Treatment can tire me a little, but otherwise I feel OK.
What has been the biggest impact on you and your family?
Emma was with me when I was diagnosed and this was a terrible shock. Telling the kids and my extended family was extremely difficult as cancer is often associated with mortality. My mother has stage 4 liver cancer as well, so it really had a big impact. I felt everyone took my diagnosis harder than what I did. The fact I am living with Stage 4 cancer is always on the minds of both myself and my extended family.
Reflecting back on your journey to diagnosis, what recommendations do you have for patients and GPs?
Do not ignore a cough, no matter how young or fit you think you are. Get it checked. Make sure GP’s eliminate Lung Cancer early. As a patient, advise your GP you want to make sure it is not lung cancer.
Did you have molecular testing at the time of diagnosis?
No
Have you had access to the current standard of care treatment? (Per targeted therapy and/or immunotherapy)
The current standard care of treatment in most countries now is a third generation TKI which is currently not funded in NZ. I am on a second generation TKI.
What does living with lung cancer mean for you and your family on a day to day basis?
Everyone is aware I am living with lung cancer, I try to maintain a “business as usual” policy and proceed with everyday life. I can still have my days, as do my family when the reality of a stage 4 diagnosis is pondered upon.
Are you and your family receiving support?
We receive support from both mine and Emma’s families, as well as a group of friends.
Do you think all patients diagnosed with lung cancer should have the opportunity to receive the standard of care treatment, irrespective of their ability to pay?
Yes, I struggle at times in a developed country as to why there is no access to this.
At anytime during your lung cancer journey have you felt stigmatised because of your diagnosis?
No I haven’t, I do often get asked if I am a smoker, or told “but you don’t smoke”
What do you want the government to know (Pharmac is an instrument of government) about your condition and the challenges to get access to current day treatment now and looking to the future.
I can potentially live a number of years if the current day treatment was available to me. I contribute to the community and this country. You have the opportunity to improve lives and help the survival of lung cancer patients like me, and many others who have what I have who also add a lot of value to this country. You have the opportunity to offer people hope, a cancer patient thrives on hope. You have the opportunity to save lives and add to quality of life by making available more modern treatments. No one chooses to get lung cancer, but you can choose to give us hope and to continue contributing to our roles in society, our roles as family members, and advocates for a better future for those with cancer.
What message do you have for the general public regarding symptoms, symptom awareness and early diagnosis of lung cancer?
Do not ignore any symptoms, be your own voice and ask to make sure your lungs are OK. Be aware of your family and friends if you think their cough has been hanging around or you notice them out of breath, ask them to go to the doctor.
What message do you have for GPs regarding lung cancer symptoms, symptom awareness and early diagnosis of lung cancer?
Eliminate lung cancer early by testing for those indicators of lung cancer. If an x ray shows anything out of the ordinary, they need to be confirmed by a CT scan. Don’t just assume one is younger and they don’t have lung cancer.
We welcome anything else you wish to comment on.
I mentioned earlier that cancer patients thrive when there is hope. Knowing treatments are available in many other countries and not here is disheartening.
Obviously personally, I would like the next generation of my drug funded here as it should be. As do many others with lung cancer and their various mutations.
Photo/s enclosed.
Ben Wilson of Tuakau (South of Auckland)
Ben (left) and his brother Matt. They are the fire chiefs for the Tuakau District. (Rare to have brothers in these 2 roles)
Ben and his fiancee Emma
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