Why do people have such different experiences when it comes to getting diagnosed with lung cancer? Inspire caught up with Jules, Ian and June from our On the Right Path awareness campaign to hear about their experiences and what we can do to ensure more people face a clearer and faster route to diagnosis.
“Looking back, I can now see my body was sending signals, they just weren’t pieced together,” recalls Jules Fielder.
My backache was put down to sciatica. My shoulder pain was diagnosed as tennis elbow (over the phone) and the lump in my neck was thought to just be a raised gland, which people get when they are run down. This, coupled with the fact that I am only 38, a non-smoker and live a reasonably fit and healthy life, I believe, all contributed to my delayed diagnosis.”
Sadly Jules’s experience is by no means a one off. Vagueness of symptoms, symptom-overlap and disease misconceptions mean many patients face delays to their diagnosis. Many endure numerous visits to their GP before they are referred for investigation and tests. These delays could be difference between an early-stage diagnosis when curative treatment is possible, or late stage, terminal disease.
This is what promoted the theme of our latest awareness campaign, On the Right Path. Jules was one of nine people to share their experience of lung cancer and route to diagnosis in a bid to clear a path for those who follow.
“It’s been around a year and a half since my diagnosis and, after a lot of emotion, I have come to peace with it. I do not live with cancer; my cancer lives with me. I am the one in control.
However, I do still feel angry. I’m not a medical professional so I couldn’t have known that my body was sending out a message. I believe those little jigsaw pieces should have been picked up and that I should have been scanned sooner. My lung cancer may then have been found out at a lower stage instead of stage four. This is why I wanted to be involved in the On the Right Path campaign.
When it comes to lung cancer, I think there are a lot of preconceived notions of who this disease affects. I think lung cancer is very much associated to men. It has been largely thought of a manly illness, maybe someone who was a heavy smoker, or a man that worked in the asbestos industry.”
I believe this can impact on how quickly someone gets diagnosed so we need to break the stigma associated with lung cancer, and I will do everything in my power to help Roy Castle Lung Cancer Foundation do that.Jules Fielder
However, even when a person fits the supposed lung cancer pigeon-hole, route to diagnosis is still not plain sailing.
At 57 and a former smoker, Ian Vizer is closer to the stereotypical lung cancer patient Jules pictured. Yet he still faced resistance in his diagnosis:
“I started with a cough in January 2022 but at that particular time, we had all these horrible bugs going round as well as the Omicron variant of Covid, so I put it down to that and just got on with things.
“The cough wasn’t really that bad either and it only happened at night. I would fall asleep only to wake up coughing around an hour later. It was quite a bad coughing fit but then it would stop and I’d go back to sleep.
The cough persisted so, after some ‘gentle’ encouragement from my wife and daughter-in-law, I went to the doctor in April. I had a consultation with a clinical practitioner who too put it down to Covid. By then however, I was sure it was not Covid. I had Covid quite recently but the cough started before then. Despite this, she kept insisting it was Covid-related.
I was just as insistent however, and in the end she sent me for an urgent chest x-ray. Sooner after that, I received a phone call to say there was a mass in my lung and I was later diagnosed with stage 2a non-small cell lung cancer.”
I still have those what if moments – what if I hadn’t pushed for that chest x-ray? We could have been dealing with a completely different situation with a far less positive outcome. It shouldn’t be this difficult.Ian Vizer
Although faced with an initial hurdle, Ian’s determination put him on the path to an earlier diagnosis. He had surgery just 11 weeks after his initial chest x-ray and, after a course of chemotherapy, is now fully recovered. But, as Ian rightly points out, it could have a very different story.
When it comes to lung cancer, days matter so a vital part of awareness campaigns like On the Right Path is empowering self advocacy, equipping people with the knowledge and confidence to follow Ian’s lead and push for answers when they are not instantly forthcoming.
For June Reid however, things were far more straightforward, giving us all a clear example of best practice.
June was experiencing severe fatigue, to the point where she could barely even summon the energy to take off her coat after getting home from work before collapsing into bed. Whilst initially putting her one and only symptom down to Covid, and then long Covid, June soon recognised that something was clearly amiss and went to her doctor. This decisive action, coupled with the proactive response from her GP, all contribution to June’s early diagnosis.
“My doctor sent me for blood tests and when the results came back, everything was off the charts. I am a non-insulin diabetic and that was high. My cholesterol was high. My calcium was high. Even my vitamin D was high. As a black person that is unheard of! Black people do not have high vitamin D levels. In fact, it’s recommended we take vitamin D supplements, particularly in the winter because we don’t get enough from the sun.
I was sent for more blood tests and they came back just as bad. I was then referred to the Rapid Assessment Diagnostic Clinic at Guy’s Hospital where I met a fantastic GP called Dr. Dorset. I had a series of scans, blood tests and other things to try to establish what was causing me to feel so fatigued. That was when they saw a shadow on my lung.
They originally thought I had small cell lung cancer but it actually turned out to be an atypical carcinoid in my middle lobe. It’s a rare form of lung cancer. Fortunately, it was still early stage and I could have surgery to remove it.
Because it was caught so early, they used robots to remove my cancer, which was far less invasive and helped me heal more quickly. That’s the key, catching cancer at the earliest opportunity so it is easier to treat.
My energy levels are now so much better. I feel how I did in my forties! I feel like the old me again and I’m so grateful I got on the right path so quickly.”
June’s experience is what we need to aspire to, but in order to do this we all need to play our part.
For us, our role is to continue to raise awareness of symptoms and challenge disease misconceptions amongst both the general public and healthcare professionals. Knowledge is power and when people are equipped with the right knowledge, the path is far clearer of obstacles.
I was totally unaware that my symptoms could be signs of lung cancer. My doctors didn’t piece it together either, so absolutely there is more that needs to be done to improve understanding and awareness about lung cancer, and I am proud to be leading that charge with this amazing charity.Jules Fielder