55-year-old Duncan Edmonstone from Sandbach in Cheshire was diagnosed with stage 4 lung cancer 6 years ago. He was rushed to hospital following a seizure and, after scans and tests, he was diagnosed with advanced lung cancer that had spread to his brain.
Following his diagnosis, he had an emergency operation at Salford Royal, part of the Northern Care Alliance NHS Foundation Trust, to remove the tumour from his brain.
“I didn’t have any of the traditional symptoms like a persistent cough or chest pain, so the diagnosis came as a real shock. One minute I was fine and the next I was being rushed to hospital,” Duncan says. “It took me about 3 to 4 months to come to terms with it.”
Genetic testing on Duncan’s tumour revealed that his cancer had a rare ALK+ mutation, which means that it’s much more treatable than other lung cancers. For reasons scientists are still working out, ALK+ lung cancer is more common in younger to middle-aged people who don’t smoke.
Less than a week after his operation, Duncan was referred to The Christie NHS Foundation Trust, a specialist cancer centre in Manchester where he started on a targeted treatment called alectinib, which he is still on today.
“Before I was diagnosed, I didn’t realise how many different types of lung cancer there are,” Duncan adds. “The overall survival stats for stage four lung cancer are poor, so I was preparing for the worst, but here I am 6 years later. The drug I’m on comes as tablets which I can take at home. I have had minimal side effects which has allowed to me to live life as fully as I can.”
Duncan, who used to work in IT and has been married to Kay, an artist and art teacher, since 1998, has done a lot of travelling over the last few years.
“Beach holidays are out because my treatment means I’m very sensitive to the sun, but Kay and I spent a month in New Zealand a couple of years ago and have since been to Greenland and Iceland. We’re also looking to do an off-season tour of the Med.”
“I’ve been on a bit of a wild ride, but I’m so thankful to be alive and making memories. My team at The Christie are great and have been supportive of me throughout.”
In addition to seeing the world, Duncan is also involved in advocacy and patient support work.
“I volunteer to help people who are in the same situation I was a few years ago and to give the patient perspective to the brilliant NHS teams that are treating cancer. In addition to giving back, it’s also helped me come to terms with what’s happened to me.”
“It’s great to see that Duncan is doing so well six years after his original diagnosis and that he’s so involved with helping other patients,” comments Dr David Woolf, Duncan’s consultant at The Christie. “Most advanced lung cancers, however, are much more difficult to treat, and that’s why early diagnosis is important. If you have had a persistent cough that has lasted for three weeks or more, get out of breath easily or have lost weight without knowing why, you should go and see your GP as soon as possible. A full list of symptoms, as well as advice to help you stop smoking is available on the NHS website.”
[ALK+ mutation] Around 5% of patients with non-small cell lung cancer have this mutation.