As the incidence of oesophageal-gastric cancers continues to rise, the contribution of the healthcare professionals, who take charge of patients’ care has never been more vital.
Louise Collins is one of three oesophageal-gastric (OG) Clinical Nurse Specialists based at the City Hospital in Belfast. Louise and her colleagues, Karen Graham and Maureen Toner, look after anyone in the Belfast Trust, who is diagnosed with OG cancer.
“Once a patient is diagnosed with OG cancer,” Louise said, “we pick them up through multi-disciplinary meetings, emails from consultants who have diagnosed them and outpatient clinics. We try and make contact with them as close to diagnosis as we can and support them through the whole pathway of their care.
“Once we’re in contact with them, we act as key workers by phoning them, or seeing them at clinic or on the ward if they’re admitted. Some people may already be experiencing symptoms and will require admission for nutrition. We see them in a variety of settings – new patient clinics, obviously during chemotherapy, during radiotherapy or during the time they’re admitted for surgery. We also provide a telephone follow-up service where, when people are discharged, we contact them for a period of time and then, after that, they can contact us as well if they have any questions or concerns.
“We work with people at all stages of the cancer journey. We are Macmillan nurses but many people presume that Macmillan are for end of life and they worry, so we tend to introduce ourselves as OG nurse specialists and then, later on, we tell them we’re Macmillan.
“Once we pick people up, we follow them through to ensure they get all the tests and investigations that they need. We link in with their consultants, make sure that things are requested and then we follow through to make sure all of the tests are followed up and that they’re their case is discussed at the multi-disciplinary meetings. A lot of our work involves reassuring patients that we know about them and ensure that things move as quickly as possible. There has been a new initiative in the Belfast Trust that, once someone has their endoscopy and the consultant sees a cancer, there are a series of steps that they have to take. The consultant orders the relevant tests at the time and emails us and the MDM co-ordinator. We follow up to ensure the tests are done in a timely fashion and link in with the OG MDM coordinator to ensure their case is discussed. That was a new initiative established a couple of years ago.
“While there are three of us in the Belfast Trust, there are also OGCNSs in the local Trusts and they will pick up people at, for example, Altnagelvin or Craigavon. It’s really about giving patients advice and information and supporting them.
“Some patients will have issues with their nutrition, such as difficulty with swallowing, vomiting or lack of appetite and we will be involved in helping with those symptoms. We link in with the dietitian who will work along with us. It’s really about providing information and symptom management.”
As with most cancers, Louise is very aware of how important it is to get the message across that people should act quickly when they notice any unfamiliar symptoms or feelings.
“It’s vitally important people get symptoms checked as early as possible,” she continued. “Unfortunately, with OG cancer, the majority of people aren’t diagnosed until they have symptoms where the cancer is a bit more advanced, for example locally in the stomach or the oesophagus. But once it gets to a certain stage, it can go into the lymph nodes and then spread throughout the body, so early diagnosis really is the key. The earlier the diagnosis, the better the outcome.
“One of the problems with OG cancer is late presentation and, by that stage, the cancer is more advanced, which then reduces the long-term outcomes for those patients.”
As with many healthcare issues, the current COVID pandemic has caused more problems for patients: a fact of which Louise and her colleagues are more than aware.
“There’s no doubt that COVID has just made the situation worse. Local Cancer Nurse Specialists would point out that people are presenting a bit later and with more severe symptoms, so the worry is their survival rates aren’t as good. I think over the next year we’ll probably see that being the case, but I think a lot of people don’t like to go to their GP at the moment. I would recommend, however, that if symptoms persist, then people definitely need to go and see their GP.”
Louise is only too aware that, because the symptoms of OG cancer tend to be vague, people are less likely to act on them at an early stage.
“I think with some of our patients they’ll may have had an episode where their food sticking months earlier, but it only happened once. Once that happens, people will adapt their diet and eat more soft foods without actually thinking there’s anything wrong. Or they think they’ve got a hernia. It’s about getting that message out there – if people do notice that they have difficulty swallowing or have unexplained weight loss, then they need to act straight away. Anything that constitutes a change in habits or a change in their bodies needs investigated.”
Historically, OG cancer has been seen as an ‘older person’s disease’ but as Louise and her colleagues fully appreciate, this is not always the case.
“We do know that it is generally a cancer that occurs in the older age groups, but we also have an increasing number of younger people – particularly people in their fifties – now being affected, even though the average age is supposed to be around late sixties. Also younger people need to be aware so that if they see symptoms in their parents or grandparents, they can encourage them to do something about it.
“I think the main stage we see people at is when the cancer has started to affect their eating. They either can’t eat or the food sticks and that puts them off eating the rest of their meal.
“On occasion they may not be able to get food down and that will make them regurgitate their food, so they’re not eating as much and, as a result, will lose weight. People with stomach cancer may feel full very early or they’ve got reflux or indigestion and that puts them off their food, so they’re eating less.
“Anyone who has presented at their GP surgery with such symptoms and the symptoms haven’t improved, needs to go back to the GP within a couple of weeks and let them know nothing has changed. Sometimes people can see different GPs at different appointments, so it’s vitally important that they relay to each GP what has happened before…..join the dots if you like. It’s really just about pushing and saying ‘I need something done about this’. The OG Cancer NI campaign is giving everyone the opportunity to talk about a disease that hasn’t been in the spotlight before and it’s time that this cancer and its symptoms were highlighted so that more people can be diagnosed and treated at an early stage.”
Health Minister thanks incredible Samaritans volunteers
Minister Swann has visited local volunteers from Coleraine and District Samaritans to thank them for the vital work they are doing to support those in need.
The visit took place ahead of Samaritans Awareness Day 24/7, which takes place every year on 24 July. The date is used to highlight that Samaritans are available 24/7 to listen to anyone who is struggling to cope.
Speaking following the visit, Minister Swann said: “Samaritans in Coleraine have been providing this essential service for over 50 years and I was privileged to meet some of the team yesterday. The COVID-19 pandemic has been extremely difficult for many people. The impact on emotional wellbeing and mental health will continue to be felt for many months and years to come.
“The service that Samaritans provides ensures a listening ear for those who are most in need. During this challenging period it is essential that people know there is help available when they need it. Encouraging people to talk about their problems is the first important step in dealing with mental health issues.”
The Samaritans provide confidential emotional support to any person, who is suicidal or despairing, and work to increase public awareness of issues around suicide and depression. Trained volunteers provide the support service.
David McKeown, Director of Samaritans Coleraine said: “Samaritans volunteers have been there for others throughout the pandemic, and the challenges that many people have faced because of the pandemic are continuing and won’t necessarily ease with restrictions lifting.
“Other people may find returning to everyday life more challenging than others. Samaritans is encouraging people to offer a listening ear to anyone they’re concerned about.”
Recognising the commitment of Samaritans volunteers, Minister Swann said: “I want to pay tribute to the Samaritans team who dedicate their time to helping others. The incredible volunteers I met in Coleraine come from all walks of life and should be commended for the vital role they play in ensuring that those who need support get it.” Samaritans can be contacted at any time on Freephone 116 123.
Frustration At Trying To Get Oesophageal Cancer Diagnosis
The symptoms of oesophageal-gastric junction cancer are vague and difficult to determine, but when Sean Greer was sitting in front of a bowl of soup for lunch and finding it really difficult to eat it – feeling like it was climbing a hill – he knew there was something wrong.
“My first recollection of feeling that something was unusual,” Sean said, “was back in September 2019. I’m in a drama club and I remember going down to rehearsals on Sunday afternoons and the feeling I had was that my stomach wasn’t right. I was slightly nauseous and I couldn’t tell if I was full or hungry, which sounds a bit strange, but from then on the messages that my stomach was sending to my brain didn’t seem to make any sense. I had this sense of “Have I not eaten enough?” or “Am I too full?” There was this strange, uncomfortable feeling, but it didn’t stop me from doing anything. Eventually, however, there was just too much discomfort and so eventually I did go to the GP.
“His guess was that it might be helicobacter pylori.(HP) – a bacteria that causes stomach ulcers. There was a simple test for that that proved positive, so they gave me a course of antibiotics for a week and I took those and that eradicated the HP, but it didn’t make any difference to me, so my initial assumption was that the antibiotics hadn’t worked. I was back at the GP in December and he had started to think it might be a kidney stone or gallstone, so he said not to worry and he referred me for an urgent endoscope. I was happy enough with that as, again, I wasn’t in any terrible discomfort. I didn’t think I was losing any weight but, in retrospect, I maybe had but I’d never been very big anyway. If I’d been 20 stone and had lost four stone, it would have been significant, but if you’re nine stone and lose half a stone it’s not that much.”
For a while, things seemed to be OK, but, by late January, Sean still hadn’t heard anything and so he’d started to think the GP hadn’t called the hospital or hadn’t made the referral, and so he called the hospital himself. It turned out that Sean’s name was on the list, but the list was an incredible 72 weeks’ long.
“I didn’t know what ‘urgent’ meant,” Sean continued, “but evidently “urgent” didn’t mean “urgent” at all. That was the first big shock.
“Meanwhile I was starting to feel a bit more uncomfortable. It was a strange feeling in my stomach. The nausea was stronger and I wasn’t enjoying eating as much, but I didn’t have any problem with anything sticking or anything like that. then I started to think maybe I should try and get something done privately – reluctantly – but we had some insurance at work that had actually just come in, so I thought I would try that, but, before I did anything about that, the hospital called me in for an ultrasound.
“I went for the appointment in mid-March for an ultrasound and it was all clear. Everything – stomach, spleen, gall bladder – all was clear. That was good news but equally bad news because I still felt the same and now had no answer. Just the next week, everything went into lockdown and I wasn’t able to get anywhere with the GP or even private clinics and they were only offering consultations over the phone.
“It just felt really uncomfortable and my stomach started to feel cramped – especially early in the morning. I stopped sleeping well and would get up in the middle of the night after two or three hours, so I’d started sleeping on my back. Towards the end of April my wife and mother-in-law persuaded me to go to A & E. I knew it wouldn’t help because they don’t give you endoscopes at A & E, but it was my only option.
“I’d also started to get night sweats – you wake up and your clothes are wet. You wake up after a sweat. It was surprising how wet my clothes would be. I didn’t know that was a sinister symptom. When I was at A & E they treated me well but they weren’t really able to do anything for me beyond the normal observations. I went to them because I had nowhere else to go. What they actually did was send my blood to the lab, asked about symptoms, felt my stomach and told me everything was fine, and keep pushing for an endoscope, which is what I really needed most.
In April I was furloughed from work, but I spent a lot of time in the garden. I was really tired and I didn’t know why. I think symptoms creep up incrementally on people. Some are more reluctant to heed their symptoms and avoid the GP. Because things creep up you don’t take them that seriously but you just start to notice. I couldn’t understand why I was so tired.”
It was much later in early August that my blood was taken again at the request of the hospital consultant who was now on the case after a private CT scan in July. It was then that I got a phone call from the hospital telling me my iron level was 79 and to go, almost right away, for an iron infusion, my iron levels had been slowly going down as a result of the undiscovered tumour which was growing in size.”
“The time period between when I went to the GP and the tumour was confirmed was about nine or ten months – between October 2019 and August 2020. I asked about the stage of the tumour several times, but consultants are very reluctant to tell you the stage because each individual varies and each cancer case varies as well. It was about ten centimetres but not in diameter; I asked the consultant if it was like a big apple but he said more like a banana.”
As with most patients with cancer, Sean’s journey with the disease was just beginning.
“Everyone’s cancer journey is two halves,” he said. “You have symptoms and you’re trying to get it diagnosed and that journey can be long and stressful because you know something’s wrong. It’s nearly like a relief to get a clear diagnosis, but then it’s a scary diagnosis and then you’re looking at the next road ahead which is treatment. It’s bumpy too, but you’re in the hands of experts. When you get the final diagnosis, it’s a mixture of relief and anxiety and fear. I didn’t dwell on things because I didn’t want to scare myself too much.”
Sean immediately started focussing on his recovery.
“I was determined to be positive about it and I’m lucky too that the people around me were very supportive as well. It’s quite hard telling people. That’s a stress in itself. Calling your friends and family – going round to tell your mum – even though they knew something was wrong. You have to explain it seven or eight times to different people.
“I read a bit about it on the internet but Dr Google can get you into lots of areas you don’t want to be in. I found a good book and read it because my idea was to know your enemy. I didn’t get down about it. The hospitals do move quite quickly. Chemotherapy was only a few weeks away and it was good because you felt something was being done. The chemotherapy worked quickly and eating became easier soon after the treatment. I was still anaemic for quite a while – I had to get iron infusions and I was very tired for a long time, but eventually that came back. The chemotherapy lasted until November last year and then I had a brief window of about three or four weeks in December when I could eat well and felt good. That was the best I’d felt in a year. I felt I was on the road to recovery. Then I had surgery on 4 January.
“I’m now walking every day and trying to get used to eating again. I’m looking forward to getting back to work again – I think I’m too young to retire. Being on furlough has been inadvertently helpful for me.”
“It was a weird time for everyone but maybe even weirder for me. Furlough or not though, I wouldn’t have been able to go to work at that time. My workplace was very understanding.”
Sean’s outlook and perspective on his experience is extremely positive and he’s looking forward to what the future holds for him.
“From here on in, I’ll be getting a regular CT scan just to check everything’s OK,” he said. “I think everyone with cancer always has that niggling fear of a return in the future and it’s vital to go back to the doctor if symptoms return, but the pathology results of my surgery were very good. The consultant told me they were very confident that they got it all. My surgery was the very last one of the oesophageal-gastric cancers they operated on before they stopped all the surgeries because of Covid. I got someone else’s slot because they cancelled, so I would only have been getting it now, so I consider myself extremely lucky.
“After experiencing oesophageal cancer, the main thing is that you feel lucky. Lucky to be alive.”