Misdiagnosis may have denied me the chance of curative treatment

Sally is one of our patient advocates. She is sharing her lung cancer story at the British Thoracic Oncology Group’s (BTOG) annual conference today.

Sally was misdiagnosed not once but twice and is now living with incurable lung cancer. Her story is a stark reminder of the responsibility medical professionals have – our lives in their hands.

Sally Hayton | The Christie Hospital where she now attends a lung cancer clinic with Dr Summer [insert] every four weeks

“My story starts like so many. I had a persistent cough and was given antibiotics by my GP. However, when it didn’t clear up, I was referred for a chest x-ray.

It was at this point that my lung cancer should have been diagnosed. Notice, I said should because, at a consultation in a lung cancer clinic I was actually told I did not have lung cancer.

That was in January 2013 but when my symptoms continued, I was sent for a CT scan. The scan showed the middle lobe in my right lung had collapse. My multidisciplinary team (MDT), including the consultant I had already seen and a consultant radiologist decided it was benign.

Obviously I was relieved; I trusted the experts and went on with my life until, in November 2013, I started to loose vision in my right eye. I went straight to my optician and was referred immediately to the Manchester Eye Hospital. From then on, things moved very quickly.

The consultant at the eye hospital said the loss of vision was likely to be down to a tumour behind my retina. I was then referred on again, this time to a professor of ocular oncology, who did a biopsy of my eye and confirmed that there was a primary tumour in my lung. I was given 10 months to live.

Everything we know about lung cancer is that early diagnosis is key; the sooner lung cancer is caught, the better your chances. I was potentially denied an early diagnosis and the chance of curative lung cancer treatment.

Sally was misdiagnosed twice before eventually being diagnosed with terminal lung cancer

To say I was upset is a massive understatement. Not only was I dealing with a terminal lung cancer diagnosis, I was also left with the most awful feelings of ‘what if’. In my case, there were two opportunities where my lung cancer could have been diagnosed earlier – a year earlier.

Everything we know about lung cancer is that early diagnosis is key; the sooner lung cancer is caught, the better your chances. I was potentially denied an early diagnosis and the chance of curative lung cancer treatment.

Instead I am having life-lengthening treatment – 10 sessions of radiotherapy, 4 x 3 weekly cycles of combined chemotherapy (cisplatin and pemetrexed), pemetrexed maintenance therapy and now targeted therapy, crizotinib. I attend a lung cancer clinic at the Christie every four weeks and an ocular oncology clinic every 6-8 weeks.

I do not share my story to scare people. I do not share my story because I am bitter and twisted and what everyone to know what happened to me.

I share my story for two reasons. The first is to show that lung cancer is not an immediate death sentence anymore. I was given 10 months to live and yet, thanks to the continual development of new treatments like immunotherapy and targeted therapies, mean over four years old I am still here.

The second reason is to provide a living reminder to medical professionals here at BTOG, and the Government, Public Health England and the Health Committee of the responsibility they have. I was misdiagnosed twice. This should not happen. Whether it is a resource issue, a training issue, a time issue – whatever the issue it needs to be addressed because it is costing people their lives. I don’t want anyone else to go through what I have gone through. That is why I am sharing my story.