Supporting the

Neuroendocrine Cancer Community

New Ambassador – Lisa

Jan 4, 2023

Lungs and Longevity – Meet Lisa Webb, our latest Ambassador

My name is Lisa Webb and in 2021, after many years of visiting my GP in my hometown of Belfast, Northern Ireland, I was finally diagnosed with Lung Neuroendocrine Cancer.

I have always been in good health other than mild asthma. So, in 2010, around the age of 37, when I began to experience intermittent breathlessness and a persistent cough, I thought it was an asthma flare up. My GP diagnosed ‘cough variant asthma’ and I was put onto a treatment plan.

Over the next few years, I went back and forth to the GP regularly. I developed a noisy wheeze and couldn’t breathe when I lay on my left side. Nothing prescribed seemed to help, and I felt like I wasn’t believed when I said I was taking the medication correctly every day but seeing no progress.

In the summer of 2019, I developed a chest infection that hit me quite hard and in March 2020, I picked up a virus which absolutely floored me (there were no Covid tests readily available at that time, but it was likely this was what I had). I ended up in A&E, feeling very poorly and had a chest x-ray. One doctor said she was concerned about my left lung and wanted to have a closer look, but as the hours went by and the staff changed over, I was seen by another doctor who told me I was fine and discharged me.

It took months to feel better, but I stopped going to the GP as I just felt unheard. The symptoms were difficult at times, but I continued working, studying, going to the gym, and running. I didn’t feel ‘sick’ as such and just learned to live with the difficulties.

In 2021, I moved to England. Kate, my new asthma nurse, really listened and took seriously my concerns. After a few treatment plans with no improvement in my symptoms, Kate ordered a chest x-ray, which was followed up by a CT scan. I was slightly worried but grateful that I was being looked at so closely after years of feeling ignored.

I was so shocked when I was told I had a tumour in my lung. Telling my family was the hardest thing I have done. I cried for days. How did I end up with cancer? I don’t smoke, I keep fit and eat well.  It just didn’t make sense. I felt let down, I had been asking for help with these symptoms for years.

Initially, I was told I had a ‘typical carcinoid tumour’ and whilst I would have to have my entire left lung removed due to its position, the tumour was so slow growing that when it was removed, I would be able to get on with life and not really have anything to worry about. The (short-lived) relief was immense.

I knew nothing about cancer or Neuroendocrine Tumours and so, I read everything I could and began to see there was a huge disparity in how the medical profession termed, viewed, and indeed treated, this cancer. I read medical papers, interviews, patient stories, anything I could find. I came across Neuroendocrine Cancer UK and Professor Was Mansoor on You Tube. I learned so much from these resources and discovered that how I was followed up after my surgery would be hugely important.

I had a left pneumonectomy on 8th March 2022. The surgery was brutal and the recovery tough, but I consoled myself with the thought that I was now ‘cured.’  At my first follow up in April, I was devastated to find out the tumour was actually an ‘atypical carcinoid’ (more aggressive) and that some of my lymph nodes were also diseased.  Red flag: The follow up plan offered remained the same though and I became worried.

From my research, I knew that a Gallium pet scan would be helpful, but my local hospital didn’t offer this. I realised the importance of having specialist care, so I requested a referral to Professor Was Mansoor who agreed to take me on as a patient and I moved my care to The Christie NHS Foundation Trust Manchester, which is one of the UK’s 14 Neuroendocrine Cancer Centres of Excellence.

My Gallium scan in October 2022, unfortunately showed further spread into my central lymph nodes and whilst this was upsetting news, it demonstrated the value of the research I had been able to undertake about my condition.

Knowledge truly is power and learning about Neuroendocrine Cancer helped me to self-advocate for the correct standard of care. If I had been unable to do this, I would be living with further cancer spread that could not be seen, monitored, or treated.

Currently, I am awaiting further scans to assess the growth rate of my cancer, and this will inform any treatment plan needed. I face an uncertain future, like all of us with NET’s, however, I feel seen, heard, and well cared for, by Professor Mansoor and the NET team at The Christie.

My advice to anyone on this journey is to educate yourself as best you can about your condition, treatment options, and symptoms. It can seem daunting as there is a lot of information out there, but you can reach out for help. Neuroendocrine Cancer UK have a specialist ‘Ask The Nurse’ service, a GP Learning Course, and a Helpline which can support you as you learn. The patient support groups called ‘Natters’ are also invaluable for sharing knowledge with other patients and asking questions – and there’s an annual Patient Education Event, too.

Knowledge, and the opportunity to self-advocate, is vital when faced with an uncommon disease and as a new ambassador for Neuroendocrine Cancer UK, I hope to help push this message in any way I can.