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.”