It was an experience that never really left my mother’s mind. From time to time for the rest of her too-short life, my mother would say: “I hope I never die of bowel cancer. It’s the worst death you could have.”
In 1997 she died of bowel cancer, and it seemed to us to be the worst death she could have.
With her surviving brothers and sister, my family watched her suffer over a prolonged period.
But intervening years have left us wondering whether bowel cancer really caused her death. Of course, by the time she died, it had spread beyond hope but was even that the true cause?
Or did she die because, even though she faced her biggest fear she failed to act on the warning signs?
Even in 1997, was bowel cancer really the automatic death sentence? From memory, health authorities then used a slogan along the lines of ‘Will you die of embarrassment?’ because too many people were too embarrassed to mention to doctors that something may be wrong with private areas, or that private functions were suggestive that something was seriously wrong within them.
Did embarrassment kill our mother - or Ma as we called her then - at the relatively young age of 62? It would seem so. Fear also, and denial. Fear that the thing she feared most had invaded her body. Denial that the symptoms she was experiencing could have only one meaning.
The one thing I and the rest of the family are certain of is that, while our mother died the terrible death that had haunted her nightmares and left the rest of us bearing mental and emotional scars, the fact is that she probably need not have died at all.
Not so soon anyway. And not in the way that she did, trying to hide the worst of her pain from us, especially her two sons because of the nature of the symptoms, until the outmost limits of human endurance dictated that she could hide it no longer.
We are fairly sure she knew there was a problem of some sort as long as two years before she sought help. Why did she not realise that medical science had made many advances since granny died? We know she saw cancer as a death sentence, but she was also someone who worried about loss of dignity. Could the rest of us have done more to make her realise that she needed medical advice, and to persuade her to face up to her fears? Personally, as the oldest of her five children, I often wondered whether I could have done more to make her confront the truth earlier. After all, cancer is a disease for which time itself can make the difference between life and death.
“You couldn’t have made her go,” says my sister Patricia, who lived with her.
“She was too embarrassed and my heart was breaking and I used to tell her that the pain would get so bad that she would have to go for help, but she wouldn’t listen. She thought it was irritable bowel syndrome - she just didn’t want it to be cancer because she thought cancer would kill her. And she was embarrassed, she told me that often enough. A lot of older people were like that, and probably still are. Only I and Christine and Janice saw her in pain until the end because she was even too embarrassed to let you and Daniel see her that way, and when you left the room she’d let it out then.”
Memories of those painful days flooded back as I sat recently in the office of Dr William Dickie, situated in a small back corridor at Altnagelvin Hospital. And the more he spoke, the more I realised that my thoughts that my mother’s death was needless were grounded in reality. Had she sought treatment as soon as she first noticed the symptoms then her life would almost certainly have been prolonged.
Today, consultant gastroenterologist Dr Dickie is passionately pioneering work that could drastically reduce the number of deaths caused by bowel cancer in the North West. He is a man who needs to be listened to. It is clear from talking to him that time is everything, and his longterm aim is to ensure that everyone over the age of 50 will be screened so that in many cases the cancer can be prevented from ever occurring - and if it does occur, be treated long before symptoms develop.
For now, due to the limitations of the pilot screening programme, he is helping to screen everyone who has passed the age of 60, up to 69.
So what is the role of a gastroenterologist in detecting and treating bowel cancer?
“Colonoscopy is the main means of diagnosing bowel cancer,” says Dr Dickie. “There are four consultant gastroenterologists here, and there are three nurse endoscopists who essentially function autonomously. They are all extremely skilled and they are a very important part of the set up. We have two colorectal surgeons, who are the people who do the operations when people with bowel cancer require it and then we have visiting oncologists. They come down once a week...people with more advanced bowel cancer may require chemotherapy and that’s where they come in.
“Also we do quite often require X-ray input so the radiotherapy department is quite important in detecting bowel cancer.”
A former Queen’s University student, Dr Dickie says he deals with “problems within in the gut”, and that he usually sees patients after referral from a GP.
“It is primarily an out-patient based service and people primarily have their procedures done as a day-case. The endoscopies that we do, some are purely diagnostic, you may be taking tissue samples, but a lot of our work is therapeutic as well, so that means, for example, if someone has a polyp in the bowel we can remove it.
“That’s an extremely important part of the management and prevention of bowel cancer. If someone has a narrowing within either the gullet, stomach or colon, we can stretch it, if someone has advanced cancer which is causing obstruction, which we can not deal with surgically, we will put a stent in which will allow opening up of the narrowed area.”
Since he first began working at Altnagelvin hospital the workload has increased considerably.
“When I started here I was the second gastroenterologist in post here, I joined Frank O’Connor.
“Now we have expanded and there are four consultant gastroenterologists, but we are undermanned in terms of the demand that there is out there. What we are doing compared with 15 years ago, is in terms of endoscopic procedures, the actual demand has increased considerably.
“In a year, in Northern Ireland as a whole, if we focus on colon cancer, there are over 1,000 new cases diagnosed in Northern Ireland every year. There are around 400 deaths due to bowel cancer; it is the second most common cause of death in Northern Ireland, after lung. You are talking about 40% dying, but that is because quite often when the cancer diagnosis is made, the tumour has advanced.”
I tell Dr Dickie that I felt my mother had ignored her symptoms, and asked whether this was still an occurrence that he came across too often.
He responds: “I think awareness is much better now than it was, say ten years ago, and there was a tendency if you saw a bit of blood in your stool to attribute that to piles. But I think certainly awareness is much greater now and people are more inclined to seek medical advice.”
Asked whether this meant fewer people were dying, in percentage terms, than they were ten years ago, the consultant adds: “There are over 1,000 new cases in Northern Ireland a year. The bottom line is that one in 18 of us is going to get bowel cancer. So it’s extremely common.
“How good the outcome, depends to a large extent on what stage it’s at. We stage cancer 1 to 4. You have the wall of the bowel, you have a layer of muscle on the outside and then you have the fatty tissue beyond that.”
If the tumour is confined to the wall of the bowel the prognosis is best.
Saying that doctors talk in terms of five-year survival - and as bowel cancer tends to mostly occur in people over the age of 60, Dr Dickie adds: “So you are never going to get 100% five-year, but if you can get it early you are talking about a five-year survival of 92%, which is very good. Now when the tumour goes through into the muscle, the five-year survival goes down to 79%. As the tumour progresses, the next thing that happens is it spreads into the lymph glands, so if you take the tumour out and there’s lymph gland involvement or stage 3 cancer the five-year survival drops down to 48% and then worst case scenario is when we get what we call distance metastasis - this is when the cancer spreads, for example to the liver or to the lungs, then you are talking about a five-year survival of only 10%.”
Our mother was stage 4, I realise.
“Most cancers start off in the bowel as polyps, or adenomas, collections of abnormal cells and as these get bigger the tissue within them becomes more and more abnormal until you actually get cancer tissue,” continues Dr Dickie.
“And then the cancer tissue goes through the base of the polyp and into the wall.”
From polyp to cancer could take five to ten years, says Dr Dickie.
“So there’s a long lead time and if you get in early and find one of these adenomas, you can actually remove it with the endoscope. You can go in with a wire snare, a lot of these polyps are like mushrooms, they sit on a little stalk, and if you get your snare round the stalk, you can take the abnormal tissue away. You apply an electric current. And if you remove that polyp you have effectively prevented a cancer from developing.
“The bigger they are the more likely they are to progress to cancer and the more likely they are to have cancer cells within them. We generally remove them all irrespective of size but the bigger they are the closer they are to that transformation into malignancy.
“If you wait until you get symptoms - there are various ways in which bowel cancer can present, it can present with diarrhoea, it can present with blood in the stool - with some people the only manifestation is in their blood count, they become anaemic. If it’s high up in the colon you are not going to see blood in the stool, so for a lot of people the only manifestation is anaemia.
“They come along and they’re tired, and they feel run down and their doctor does a blood count, and they are anaemic. The type of blood count you get with bowel cancer is iron deficiency, because you are losing blood.
“The problem is that only one in ten cancers is early stage if you wait until symptoms develop.”
In this case, it’s reasonable to wonder whether people really have a chance to act quickly before bowel cancer establishes itself, and spreads from the bowel wall, if they don’t see blood in stools and are not anaemic because of iron deficiency.
But it transpires that this is where consultant gastroenterologists like Dr Dickie, rather than the colo-rectal surgeons, are the true hope of all people who may develop cancer in the colon. In fact, due to the work of him and his colleagues, countless numbers of people may be saved from ever developing bowel cancer at all.
“This is where cancer screening comes in,” he says. “It was already up and running in England, Scotland and Wales but was only introduced here last year. 80% of people with bowel cancer are aged 60 or over so initially we are targetting people in the 60 to 69 age group and the idea is if you get your stool tested for blood, that is a marker for bowel cancer. What happens is as part of the national programme people in the 60 to 69 age group are invited to submit stools for testing for blood. You send six samples and if a reasonable portion of those are positive, you will be invited to come for a colonoscopy.
“Those are people with no sypmtoms. That’s what screening is all about. It’s looking for disease before symptoms develop. This is only the third screening programme to be introduced here, behind breast cancer and cervical cancer screening.
“If you wait until after you get symptoms you have only a ten percent chance that the cancer is early stage, and the whole point is to get the bowel cancer before it causes symptoms, so not only is the outcome better but the treatment is less complicated. The other thing is that if you are in there and find an adenoma - one of these polyps - by removing it you will prevent cancer.
“There are three Trusts in Northern Ireland doing this at the minute - the Western, the Northern and the South Eastern. To participate in this your endoscopy unit has to meet certain criteria and we are one of three endoscopy units that meet those criteria. That required considerable work by the staff here.”
Twelve months into the screening programme, the results are already significant. Since the programme started, 182 people have had positive stool testing and went for bowel investigation.
“Out of these 182 people, ten per cent of them had cancer. That’s a one in ten pick-up rate. 58% of these cancers that we diagnosed through screening were early stage (compared to 10% diagnosed after symptoms appeared).
“None of these screening detected cancers were stage 4, and in fact 58% were either early stage or what are called cancer in polyp, and this is where you have a polyp with cancer in it. The great thing about cancer in polyp is that sometimes when you do your polypectomy, you can remove it with the wire snare.
“Six patients had cancer in polyp and four of those had the cancer removed completely at the colonoscopy. So they came in for a day case procedure, and at the end of the procedure they walk out and their cancer is sitting in a pot to go to the lab.
“If we go back to the 182 people, over half of them (52%) had these adenomas and they were removed. We have no way of telling how many of these would have progressed to cancer but if you remove them you have effectively stopped a cancer from occurring.
“Basically it works. Number one you are picking up cancer earlier, and earlier stage means better survival and two you are picking up polyps and if you remove those you are preventing a cancer happening.”
Dr Dickie believes that of all his work, the cancer screening is “by far the most valuable thing I do”.
While most people who develop bowel cancer are over 60, there are, of course exceptions.
“Scotland, for example, will screen from age 50 onwards,from 50 to 74. In England and Wales they screen from 60 to 74. Like everything else it requires resources, and you can say all kinds of things about the health service in the United States but most US health care providers will plan for screening at the age of 50.
“So, how would I like to see this developing? We do have people in their 50s who have polyps, who have cancer - it’s a matter of getting the resources for this.
“If screening gets established, and it’s early days yet and we can expand the age range for screening it will have a knock-on effect for cancer prevention. I see a lot of people in their 50s coming through with colon cancer. 80% of people with bowel cancer are over the age of 60 but people do present at an earlier age and ideally I think we should be aiming for the Scottish model, screening from the age of 50.”
While many of his patients will die, and he admits that this has an emotional effect on him, Dr Dickie prefers to look to the positive outcomes of the work he and his team are conducting at Altnagelvin Hospital.
“One of the things as you get older is that you see more and more people diagnosed with cancer who are younger than you are - that’s the thing that strikes you the most.
“But to make an early diagnosis and knowing that you have influenced the outcome by making that diagnosis or removing a polyp before it becomes cancerous is hugely satisfying.”
Finally, for those who cannot yet avail of the screening programme Dr Dickie has some advice about what to look out for.
“Anybody over the age of 40 with iron deficiency anaemia, should be considered for gut investigation,” he says.
“A lot of people have bowel upset, it’s been going on for years and if it’s been going on for years it does not reflect significant disease.
“But a sudden change in bowel habits, and again if it’s in people 40, 50-plus, if the stools are looser, if they are going more often, they need to get that checked out.
“If they see blood mixed in with the motion - now bleeding for piles for example you tend to have a big show of blood into the toilet and that’s actually the one that people get alarmed by but the bleeding that you get from bowel cancer is much more subtle, you will see traces of blood coating the stool and because there’s not a huge amount, people are not awfully concerned about it. But that is the sort of blood that we would be concerned about.
“Now if there’s a family history of bowel cancer, there’s no doubt that it can run in families and certainly if there’s bowel cancer in your family affecting more than one immediate relative, or if there’s someone in your family with bowel cancer or polyps under the age of 50, you need to be checked out.
“If you have someone in your family who was 70/ 80, that does not increase your risk, but multiple family members or if someone in your family who’s relatively young, under 50, has bowel cancer that may indicate there’s a hereditary factor there.”
(Oh dear, another jolt to the memory. I had a polyp removed a year or so after my mother’s death, when I was in my late 30s, and had forgotten about it ever since. Time for a chat with my own GP, perhaps?)
Strangely, the discussion with Dr Dickie was not the gloomy one I had imagined, but was in many ways an uplifting one, to hear someone so dedicated to his work describe how there is so much hope on the horizon. Medicine may have made great advances between the time my granny Allen died and the year that my mother passed away a quarter of a century later, but it seems that it is now making even greater strides forward, in terms of detection, cure and even prevention. Nowadays, if it is caught early enough, it seems that it’s even possible to have bowel cancer completely removed during a day-case procedure.
Thanks to Dr Dickie and those who work in the same field, a better future is being created in which many fewer people will die needlessly from bowel cancer - so long as they heed the messages and take advantages of opportunities for early detection.
And if they do, many more families will be spared the agony of watching them suffer.