I was diagnosed back in September 2017 with incurable inoperable stage 4 ALK+ lung cancer, even though I had never smoked in my life. About 15% of lung cancer sufferers are non-smokers and very little is mentioned about this as it's thought to be a smoker’s disease. I have always pursued a healthy lifestyle and diet and for 20 years I have regularly played tennis.
Just over 2 years ago, I went to the doctors with a persistent dry cough. I was seen by a trainee GP who thought it may be caused by acid reflux. I took some tablets and the cough subsided for quite a while. About mid-June 2017 I suddenly began experiencing breathlessness when playing at tennis matches. I went to the doctors and they sent me to get a chest X-ray. The results were negative, so they ruled out anything serious and began testing for late onset asthma. After about 6 weeks, I was getting no improvement from the asthma inhalers so asked if I could use my private healthcare insurance to see a specialist at the Chiltern Hospital. The specialist thought that my symptoms were asthma related and started testing me all over again, so another 6 weeks went by. I kept on playing tennis, and after a particularly exhausting match, I coughed a lot and
noticed a small speck of blood. I photographed it and showed it to the specialist at the next appointment. I was then sent to get a CT scan and a day or 2 later was told there was a suspicious shadow in my lung. Following this, a Bronchoscopy was booked and about a week after that I was told that I had advanced lung cancer that had at this point spread to the lymph system. I had a small tumour just under my collar bone.
My first line treatment worked well for about 4 months, reducing the size of the tumours. My breathlessness cleared and for 2 months I could again play singles. But in January 2018, the breathlessness returned followed 2 months later by coughing considerable amount of blood. I used my private insurance to get a brain MRI done as the policy of Bucks NHS trust is only to get one done if there are symptoms of brain tumours such as seizures etc. On my next meeting with my Oncologist at Wycombe hospital, the bad news was given to me that the cancer had spread to multiple areas in the brain and the brain lining. As a result, I had to tell the DVLA and am no longer able to drive.
Unfortunately, the first line drug has little protection for the brain and a high percentage of those with lung cancer have progression in this area. Realising the seriousness of this news, I asked my Oncologist to get a second opinion from the UK specialist Dr Popat at the Marsden in London. Thankfully I did this, and he outlined how they could apply directly to a drug company to get early access to a new drug that has been proved to be very effective on patients in the USA both in the lungs and brain. The drug Brigatinib was not yet licenced by NICE in the UK.
I began the treatment mid-June and by early August when I got a second MRI scan the disease was virtually gone in the brain! By October 2018, the disease had also virtually vanished from the lymph nodes and lungs. The tumour that had been blocking my airway had totally gone and for the primary tumour, only a cavity was visible on the scans, where it had been in the bottom of my right lung.
If I had been diagnosed fifteen years earlier, the chances are that I would not have survived as long as I already have. New advances in medicine such as targeted therapies and immunotherapy are giving sufferers a much better prognosis than in the past.