Introducing Hayley
The last thing you expect when you are young and never smoked is that you have lung cancer. But this is exactly what happened to 38-year-old mother Hayley from London in the UK who was diagnosed with stage 4, ALK-positive lung cancer in November 2021. Here she candidly shares her experience in getting diagnosed, her concerns about living with lung cancer and how research is filling her with hope for the future.
It all started in August 2021 with a persistent cough, shoulder pain and the loss of her voice. Hayley went to her GP numerous times, but each time was told she had a chest infection and was repeatedly treated with antibiotics and steroids. At one stage, Hayley was told that her shoulder pain was the result of anxiety. Finally, Hayley insisted on having a CT scan.
Hayley explains, "I had felt so unwell for some time, and I wasn't getting any better despite the antibiotics and steroids. I felt so bad the day after I had the CT scan that I again returned to the GP. This time I had pain in my leg and in my lungs that just would not subside. My blood pressure and pulse were very low and more concerningly I had coughed up blood. Thankfully the GP sent me straight to A&E with a suspected blood clot in my leg and pulmonary embolism in my lungs."
Hayley was examined closely in hospital, along with her medical history. The doctors found significant changes between her current and past scans – and confirmed lung cancer. Hayley had another chest CT scan and an ultrasound at the hospital which indeed found a blood clot in both her leg and lungs.
"Because of Covid-19 restrictions, I was receiving the most devastating news completely on my own. The consultants informed me they couldn't operate because the cancer had spread to both my lungs and throughout my bones. I was told they needed to take a biopsy from my neck, as the cancer had spread there too, to test for biomarkers. I had no idea what this even meant.
“The consultants later informed me that I had stage 4 lung cancer, which was incurable. I instantly couldn't breathe and had so many questions. I asked how long I had to live and basically was told they didn’t know.”
Adding to Hayley’s worries, the consultants shared that her blood clots were of more imminent concern than her lung cancer.
“I was all on my own, desperately crying. The shock of it all was too much. I called my mum – explained what was going on and begged her to help me. My mind was on overdrive. I just couldn't stop thinking about my son Jack.
“I also called my partner Steve, who was devastated. He rushed to the hospital and proposed to me. Steve shared that he had been planning on proposing on our upcoming 10-year anniversary (which we have since celebrated).
“Thankfully, I was able to go home that same day, so I was able to see my son and tell him the devastating news. Our hearts broke that day.
“Steve and I celebrated a big white wedding exactly one week later with the help of family, friends and even strangers. It was an amazing day. I was only on steroids and blood thinning injections, but I danced through the pain on our wedding day. It was magical.”
Research brings hope
Four weeks after the admission to A&E, Hayley received her full diagnosis: she was told she has ALK-positive lung cancer and began treatment. She was also told that the lung cancer had metastasised throughout her body, spreading to her bones, lymph nodes, chest, abdominal wall and brain.
Hayley’s oncologists had suspected ALK-positive lung cancer since it tends to strike younger women who never or lightly smoked. Hayley was relieved to hear that ALK-positive is a more treatable form of lung cancer that is managed with targeted therapies - a class of drugs that precisely target and inhibit ALK cancer cell growth with considerably fewer side effects than traditional treatments.
Hayley adds, "I take it one day at a time. I have good and bad days. I have great fears about my son and husband. I have to admit that I am still struggling to come to terms with this diagnosis. There are also some side effects from my medication: I get tired easily, my legs hurt, and I have put on a lot of weight. But none of that matters. I am so grateful to be here! I plan things in-between my regular scans so that I have things to look forward to. Time is so precious.”
On 11 November 2022, Hayley will be celebrating one year since her diagnosis. Seeing so many success stories from people with ALK-positive lung cancer who are not only alive but living well also gives Hayley much hope.
“I know the fact that ALK-positive cancer patients are alive and living well is down to medical research. I have to have hope that with ongoing research, I will be one of these success stories too.
“I know that things can change at any time, but you still have to live your life and be grateful to be alive! I have an amazing son and husband and wonderful friends and family. Being ALK-positive has given me a chance at more time. Anyone with lungs can get lung cancer. If it can happen to me, it can happen to anyone. I hope that with research we can not only continue to live well and longer, but one day find a cure."
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