Deborah first started experiencing difficulties swallowing (dysphagia) and a burning sensation in her throat while swallowing food. At first she ignored the problem, but when the difficulties persisted, she knew that something was not right and went to see her GP. What follows is a long and challenging journey in a fight against oesophageal (gullet) cancer. This is Deborah’s story.
"I was terrified, but I had come this far and I wanted everything done that could be done. If the surgery was doable I wanted to go through with it."
During her appointment, Deborah’s GP thought that her symptoms were typical of acid reflux, and prescribed Lansoprazole to reduce the amount of acid in her stomach. She used the drug intermittently for nearly a year with little success. She returned to her GP who referred her to her local hospital, The Whittington, for an endoscopy, “The endoscopy was uncomfortable, but not painful. Afterwards the consultant spoke to me and I remember that the word ‘malignant’ was used – I could tell it was not good news”. Deborah’s endoscopy revealed abnormal looking cells and she was immediately referred to the specialist oesophago-gastric team at UCLH, “I already feared the worst, but the news was still devastating. I was very teary around this time and I couldn’t speak about it without welling up”.
At UCLH, Deborah met consultant oncologist Dr Glen Blackman. He swiftly began a combined treatment plan of chemotherapy and radiotherapy. She attended UCLH every day, apart from weekends, for six weeks to receive radiotherapy. She also received chemotherapy treatment through a small portable pump, which gave her a constant low dose of the drug, “I wore the chemotherapy bag at all times, both at home and on my trips to hospital. It wasn’t too much bother other than keeping it dry when washing”. Deborah came back some three months later for a follow up scan. Dr Blackman gave her the remarkable news that the cancer was, for the time being, gone, “I couldn’t believe it – I had felt a lot better, but I hadn’t expected such good news”.
Deborah spent the next year getting her life back to normal. A year later she attended UCLH for a repeat PET scan which showed that the cancer was back again and that the only treatment available to her now was surgery. She was promptly given an appointment to see consultant upper GI surgeon Mr Khaled Dawas, “Mr Dawas was fantastic and rather handsome too! He explained to me clearly how serious my cancer was and that my oesophagus would have to be surgically removed. I was terrified, but I had come this far and I wanted everything done that could be done. If the surgery was doable I wanted to go through with it”.
"I was angry. It has been unbelievably hard, but I have had no choice but to get on with it and keep fighting."
Deborah underwent an Ivor Lewis oesophagectomy. Part of her oesophagus was taken out and Mr Dawas pulled the stomach up into the chest to replace it. 20 lymph nodes were taken out and the surrounding areas to the cancer were removed too. After the operation she woke up in the intensive care unit (ICU), which is routine after a big operation, in order for the team to check that recovery was going well, “The staff on ICU were just superb – I felt safe and reassured, despite being incredibly scared”. Deborah was then moved to the ward where she spent the next three weeks recovering, “Recovery went well, although I experienced issues with the chest drain that they had placed in me – they thought that it might be leaking, but an x-ray showed that it was okay”. She was then able to return home to begin healing.
Life has been difficult for Deborah since being diagnosed. In the months following her initial chemotherapy and radiotherapy treatment, her husband began noticing similar symptoms to those that Deborah had first experienced. After seeing a doctor and having investigations, it was found that he also had an aggressive form of oesophageal cancer and that it had spread into other parts of his body. The cancer was too advanced to be operated on and tragically Deborah’s husband died in the months afterward, “I was angry. It has been unbelievably hard, but I have had no choice but to get on with it and keep fighting”.
One year on from surgery and Deborah is on the path to rebuilding her life, “Initially I lost a stone in weight, but gradually my appetite has returned. My stomach isn’t as large as before and it can be difficult to know when to stop eating! Eating little amounts and often is the key”. Throughout every step of the journey has been Deborah’s clinical nurse specialist (CNS) Nathalie, “Nathalie has been there from the very beginning and is just brilliant. I’m not the type of person to complain about things, but if I needed her, she was always on the end of the phone”.
Deborah is now returning to work as a cashier in a bank. Her prognosis is good. She will continue to come to UCLH every three months for follow up to make sure that she is still cancer free, “I’ve always been a fit person - the cancer made me feel the worst I have ever felt, but now I’m back to feeling as fit as a flea.”