As she was recovering from COVID, Clair explains, “I noticed lumps on my spine and I found I couldn’t breathe. Even going up and down the stairs was challenging.” Thankfully, her GP was “brilliant.” He took a detailed history, examined Clair’s spine and sent her off to hospital for urgent chest and spine x-rays. 

“Within a day, my GP called to tell me that there was shadowing on my left lung, and that I had three broken vertebrates in my spine,” Clair says. “Later that same day, a lung cancer nurse specialist called and asked me to come in for a CT-scan. When the nurse called just two hours after my scan asking me to come in, I knew it was cancer. Little did I know it would turn out to be stage 4!”

The next two weeks were a blur for Clair, filled with a battery of hospital appointments and examinations. Meanwhile, she was barely able to walk and was in a huge amount of pain. Clair underwent an MRI of the brain and a biopsy of her lung. These were to confirm the cancer had not spread to her brain, which can happen with ALK+ lung cancers and to check if Clair had any biomarkers, which was likely given her non-smoking status. Clair was put on an intensive treatment of radiotherapy to her spine to help alleviate the pain caused from the secondary lung cancer in the spine. Paradoxically, Clair found lying on a hard plastic radiotherapy bed without moving for 20 minutes the most pain she’d ever experienced.

"The biopsy results came back in early March, and I was told I was lucky as I had a non-hereditary mutation of the ALK (anaplastic lymphoma kinase) gene which is present in all embryos. Only 5% of all non-small cell lung cancers have this gene. The good news is that ALK+ lung cancer can be treated with a targeted therapy drug – I take one called Brigantib. This was a game changer for me, even though there were side effects, it would help to inhibit my cancer and shrink it so that I could live with it rather than it kill me."

Like many ALK+ lung cancer patients, Clair has regular chest CT and brain MRI scans every three months. Her scans are currently stable. She praises her team at Guys Cancer Centre, for their support, particularly her lung cancer nurse specialist, and also a local support group in Kent called, “Every Breath,” which meets once a month. 

Nine months into treatment, Clair - a mother to three children aged 16, 14 and 9 -  is in a much better place. She says, "My family and friends have been fantastic, and I no longer feel that my lung cancer is a death sentence. I know I can live with it. I know that, thanks to ongoing medical research, there are amazing new treatments that will help me be able to live with this in future too."

Clair adds, "Back in February, having cancer was all I thought about. I was convinced that I would be dead by the end of the year. I stopped making plans as I thought there was little point. Over time, I have learned to embrace life. Day-to-day I see myself as living with a treatable illness. Setting small manageable goals has also helped me to believe I can live a good, normal life and that cancer is just a small part of my journey now."

At the same time, Clair has found her lung cancer diagnosis life-changing. She says, "Cancer has been the most shocking thing to happen to me, especially since I am a non-smoker. However, I have met so many empowering people – including others living with incurable lung cancer like me – who have given me hope that I can be treated and live with cancer. I am more positive now and try to live in the moment as much as possible. Cancer has, in many ways, made me a better person."

Clair's advice to anyone newly diagnosed is: "Be prepared for lots of ups and downs. A cancer diagnosis is like a grieving process. Be kind to yourself and don’t feel guilty about asking for help. Join support groups online and ask your team if there are groups local to you as well. There will be bumps along the way but reaching out to other people in similar situations will help you feel less alone. Consider therapy. I went back to my therapist and it really helped to process lots of emotions and anger."

Clair also believes it’s time to educate both the public but the medical community that anyone can get lung cancer. Delays in diagnosis can happen when you’re experiencing lung cancer symptoms and you don’t smoke, are young and basically don’t fit the “typical lung cancer” profile. 

Most of all, Clair is thankful for medical research, adding: “With vital ongoing research, there will be more medications in the future. Lung cancer is not as scary as it used to be. There is an urgency, however, as at present, we will run out of treatment lines. It is so important to get more funding for those with ALK+ cancer so that we can continue to live for as long as possible and one day help turn ALK+ lung cancer into a chronic illness."

Published in November 2022