Andy, from Staffordshire in the UK, has always been content with his lot in life. He has held down a full-time role at the University of Birmingham. He married the girl of his dreams as a young man back in 1989. He and his wife Anne, raised two beautiful daughters, now aged 25 and 30. And, he had plenty of time on his favourite hobby – writing –where he’s able to let his imagination run wild and bring thoughts to life on paper. Overall, Andy was happy, gainfully employed and the future looked pretty bright.
Andy shares, “My life was probably remarkably similar to the vast majority of the population. I would go to work each day and then in the evening, go home and spend quality time with my family. I also spent time writing - a big hobby of mine. From the age of about seven, I was always penning some tale or other. I have always written to amuse myself. It's my escape from reality.”
However, Andy’s reality took a different turn in 2017, when he began investigating a constant dry cough and “crackling chest that wouldn't go away” as he puts it. His path to diagnosis was not straightforward, and Andy was sent from doctor to doctor and given various medications including antibiotics, steroids and inhalers. While he underwent respiratory tests, which he passed, he was not given an x-ray or scan. At one stage he was diagnosed with adult-onset asthma.
Finally on 9 February 2018, Andy had an EBUS (Endobronchial Ultrasound Bronchoscopy), a procedure that allows the local imaging and biopsy of certain parts of the lungs and lymph nodes, which revealed that he had lung cancer in both of his lungs. Andy, 55 years old at the time, never imagined this would be the next chapter in his story.
Life with ALK+ lung cancer
A few weeks later on 1 March, Andy received the results of his biomarker tests and he was diagnosed with stage IV ALK-positive lung cancer – a non-hereditary genetic mutation-driven cancer. While advanced ALK-positive lung cancer is incurable, thanks to research it is highly treatable using targeted therapies known as tyrosine kinase inhibitors (TKIs), which inhibit ALK cancer. ALK-positive TKIs often provide patients with a good quality of life and longer survival than conventional lung cancer treatments. Over time, however, ALK-positive cancer patients will develop resistance to their medications, rendering them ineffective.
Andy was prescribed a TKI called Alectinib. Back in 2018, it had not yet been approved by NICE – the body that publishes guidelines on the use of treatments and procedures in the UK. Andy, however, managed to obtain the targeted therapy on compassionate grounds from the manufacturer.
Andy feels fortunate to have remained on his first TKI since diagnosis. He adds, “I'm five years into this journey and I'm still on my first line therapy – this is not often the case for many others. Alectinib has allowed me to work without too many trade-offs. I get tired more easily and everything aches from time-to-time – even my toes. But most people get used to these side effects. The big positive is that the drug has kept me alive.”
Andy also appreciates that he’s been able to continue to live life much as before, continuing to work, enjoy time with family and, of course, write. He also now counts hundreds of new friends he’s made around the world through the online ALK-positive cancer support communities, where he is lovingly known as “The Bear” and he’s able to amuse, support and lean on others through his writing.
“The most unexpected bonus is that, due to the illness, I am now in contact with fellow sufferers around the world and these people are my friends. The power of mutual suffering and understanding should not be under-estimated. That bond is a crucial survival tool,” Andy emphasises.
Of course, an incurable cancer diagnosis impacts your perspective. Andy says, "The diagnosis of cancer has taught me a brutal truth: I no longer take simple things, like waking up, for granted. Nothing is promised.
“There are also downsides to living with a hidden cancer. Having scans every three months feels like you’re living your life in intervals. I find it galling that I can't make realistic plans and it irks me, probably more than it should. I often have to fight the urge to run out into the middle of the road and shout ‘I need more time! I'm not ready yet!’”
What keeps Andy and many in our community going is the promise of hope that comes from research. Andy adds, “Research and development are the way forward. I have to believe that new treatments are just around the corner and that they will redefine our illness as a "chronic" disease one day – a disease that can be controlled if not cured. I'd be happy with that!”
Andy Ward, Tamworth, Staffordshire, UK, March 2023