Liz's Story Liz’s Story - How The Cytosponge Could Change Lives Name: Liz Chipchase Age: 71 Home: Cambridge Diagnosis: Oesophageal cancer Liz was invited to take part in the BEST3 cytosponge trial by her GP in 2017. It was the first time she’d heard of the existence of Barrett’s oesophagus even though she’d been treated for acid reflux for some 40 years. Liz was curious and although she felt perfectly healthy she decided that she’d join the trial - reasoning that negative results were important too. The cytosponge ‘pill on a string‘ technique was simple. At the appointment with the nurse at her GP surgery Liz swallowed down the capsule containing the sponge – making sure someone had a firm hold on the end of the string. After about 5 minutes the capsule had dissolved, the sponge was released and this was then whisked up from her stomach and out of her mouth collecting its sample on route. Liz assured us this isn’t a painful process. She went home, had a cup of tea and forgot all about it. Eight weeks later she was surprised to receive a call to say that the results had come back indicating that she did have Barrett’s and would she be happy to have an endoscopy to confirm this. A few days later Liz went for her endoscopy and within a week was back at the hospital in a room full of serious looking people. This was when Liz first met Professor Rebecca Fitzgerald, the originator of the cytosponge (and a Clinical Trustee for HCUK) and some of the BEST3 trial clinical team at Addenbrookes. The serious expressions were because they had to tell Liz that, in her case, Barrett’s had already progressed to oesophageal cancer. As you can imagine, this news was something of a shock for Liz. How could she have cancer when she felt so well, particularly a cancer that has such a poor survival rate? Getting used to the idea that like 75% of patients given this diagnosis she was likely to be dead within five years took some getting used to – and Liz said Google was no help – its answer to “Is oesophageal cancer curable?” is a masterly example of how to avoid answering a question! Biopsies showed that Liz’s cancer had been found at a very early stage, it was restricted to the mucosal layer and could be treated by endoscopic resection, where the affected area is lifted from the underlying tissues by suction and then nipped off. After the first resection had healed she was made aware of just how very critical the timing of her diagnosis was. There were still cancer cells remaining in the lesion and one of the biopsy samples showed these in intimate contact with the underlying layer so there was a very small chance (about 4%) that the cancer had spread. Liz was offered a choice between another resection or removal of her oesophagus and considering these options really made her think about the difference that early diagnosis makes: Resection involves half a day in outpatients, more or less instant recovery and an injunction to eat soft foods for a week. Oesophagectomy means hospital admittance for thoracic surgery, a week or more in a high dependency ward, a daunting list of potential problems that could arise from the procedure including a 1% chance of death and, assuming you weren’t one of that 1%, a six months to one year recovery period before “feeling normal again”. The big advantage of this procedure was that she could be certain the cancer would have been completely eliminated. Liz opted for a second resection, hoping to keep surgery as a sort of backstop. The result much to Liz’s relief was a success! Liz has had many check-ups since and radiofrequency ablation treatment to remove some patches of precancerous Barrett’s cells. Liz’s latest endoscopy included ultrasound imaging to check there was no sign of cancer in her lymph nodes and not a thing was found. So, Liz believes the answer to that question on Google should be “yes, if diagnosed early enough oesophageal cancer patients can be cured “ and by treatment that doesn’t involve the traumatic effects of major surgery, chemotherapy or radiotherapy. Liz’s consultant has assured her they will keep a close eye for the next five years. Needless to say, Liz is immensely grateful to the whole of the BEST3 team and the more she learns about the trial the more impressed she is by the level of organisation and cooperation required to get it running so successfully in many areas of the country. Had Liz’s GP’s practice not agreed to take part at an early stage her cancer would not have been discovered until it had developed clear symptoms by which time her chances of survival would have been poor. So on behalf of patients Liz would like to say a thank you to everyone who took part in the trial. The sampling is all finished and the results are being analysed. Liz hopes they will lead to the cytosponge becoming a widely available tool that can be used to monitor the occurrence of Barrett’s oesophagus in patients in a primary care situation. Using samples collected by the cytosponge together with other data it’s possible to divide Barretts patients into 2 groups : those whose Barrett’s will never progress to cancer and those who are at risk of this happening. If this holds true it might mean that future screening could be concentrated on the ‘at risk’ group whilst saving a whole group of patients from unnecessary monitoring. So it looks like the cytosponge technique has even more to offer. Association with HCUK: Liz became involved with the HCUK Support Group in East Anglia following the BEST3 Trial and her diagnosis. She is now secretary for this very active group. They are always looking for appropriate opportunities to raise awareness about the dangers of persistent heartburn and why it’s so important to get this checked out early. As with Liz’s story, the opportunities for successful treatment are so much better with early diagnosis.