Pat Jenning's Amazing Journey

We have dedicated this whole page to an account by an incredibly brave Lady. Her story is a sort of Moral Tale - one that as Members of CBCSG, we can all equate to, but as individuals we know that we must always be aware of. The story has been edited for 'typos', and 'laid out'. All the words are Patricia's who is pictured here with her husband Philip. 

My Story of Developing Bowel Cancer, a Personal Perspective.

By Patricia Jennings

 


 
This is my story of developing the symptoms bowel cancer, how it was dealt with, and the consequences of a late diagnosis. It is a factual account and raises the importance of receiving the earliest possible cancer diagnosis. 


This story highlights the common factors, which it seems all too regularly, appear to bring about a misdiagnosis or late diagnosis of colorectal cancer.


 It appears, in the many cases which I have researched, simply by talking and exchanging experiences with other colorectal patients at hospital visits, for instance at chemotherapy sessions and when awaiting and recovering from operations in hospital, then on National Bowel Cancer discussion Forums, and within the bowel cancer support group of which I am part of now, that all too often, simple benign conditions have been diagnosed, without a credible line of investigation being made, or further reviews taking place, after the initial diagnosis. 


This appears to happen with incredible regularity and consistency, leading to the true cause of bowel cancer being diagnosed in its late or advanced stages.  
Back to the beginning……… 
I was always interested in nutrition and leading a healthy lifestyle from my youth. I paid a great interest in diet and keeping fit and well. I always cooked from scratch with fresh vegetables, very often steamed, used lean meat and fish, had small amounts of dairy food, and avoided too many fry ups, and ate lots of wholemeal bread, fruit, berries, nuts and seeds. Indeed, I mainly lived on wholefood. I walked for a hobby and enjoyed gardening. I was extremely active. I had a family, and a full-time job, for the majority of my life. 


When I was around thirty three, I was diagnosed as having the condition known as Irritable Bowel Syndrome. It is commonly referred to as IBS. Apparently, many people suffer with IBS. It is a common, non–life threatening condition affecting the digestive system.  
IBS is a condition whose symptoms, according to the NHS Choices website, can include abdominal pain, cramping and bloating and swelling; a change in bowel habit to diarrhoea or constipation, or sometimes both; excessive wind (flatulence), occasionally experiencing an urgent need to go to the toilet; a feeling that you have not emptied your bowels after going to the toilet; and passing mucous from your bottom.

 

Additional problems can be lethargy, nausea, back pain, bladder problems, pain, during sex, and incontinence. These can have a significant impact on a person`s day to day life, sometimes leading to depression and anxiety.

 
I had suffered with bloating, abdominal pain, loose stools (diarrhoea), alternating with constipation and flatulence, for a few weeks, and I felt increasingly concerned about them, and approached my GP, who listened to me carefully and then proceeded to send me for investigations, as these symptoms were very similar to bowel cancer, he said. The doctor said to be on the safe side, we would have an investigation.

 
 I underwent a barium enema, shortly afterwards, which resulted in no sign of bowel cancer. A barium enema is a procedure where a white liquid is passed into the bowel through the bottom (anus), highlighting the whole bowel, anus and rectum, clearly for examination, whilst being x- rayed. It can be carried out with sedation.


 The GP diagnosed IBS. He prescribed a medication called Colofac which is also known as Mebeverine. This medication is an antispasmodic drug and works by relaxing the muscles in and around the gut. It reduces spasms, cramps and colicky pains, diarrhoea and flatulence. 
IBS, once diagnosed, can reoccur at intervals throughout a person`s lifetime. Usually IBS can be managed but not cured. It is true to say I was affected by IBS, at times, for short periods from then on, but I found that as I grew older, and my life settled down when I remarried, it was clear that IBS now played a very little part in my life at all. IBS was very inconspicuous as I reached my fifties.

 
I found that IBS was triggered by exceptional stress, and for me, was not in any way food-related, as it is purported to be in some patients. I went through a particularly stressful time in my thirties and forties when I became divorced, then both grandparents died in quick succession, followed by my mother, who became ill with bowel cancer shortly afterwards. 

 

Mother experienced diarrhoea, followed by constipation, some of the classic, early signs of bowel cancer at around the age of fifty eight. Mother had undergone a change in bowel habits, though she told no one at the time. You see she was frightened of going to the doctor`s, of what it might mean. She put off going to the doctor`s until she knew she could cope no more. The symptoms had become completely unmanageable. She was diagnosed at the age of sixty one. She underwent surgery to have part of her large bowel removed, but she was fortunate in that she did not need a colostomy. A colostomy is a surgical procedure, where an opening (stoma) is formed by drawing the healthy end of the large intestine or colon through the abdomen wall and suturing it in place. It can be reversible or is sometimes irreversible. Its purpose is to allow faeces to leave the body, through a different channel, whilst the colon is resting and healing.  
Mum went for a few more years, then the cancer returned and she had a further operation to remove more bowel. In all, she lived a further ten years after the diagnosis and died at the age of seventy one. She had radiotherapy at one time, but no chemotherapy, as treatment of bowel cancer was far less advanced then. That was when I was forty six, in the year 1996.

  
So I thought a lot about bowel cancer. I had a greater respect than ever, for it now. I considered myself a very astute individual when it came to bowel cancer. I would listen carefully to my body. I certainly didn`t want to die the way my mother had. I`d be there at the doctor`s head on, at the first suspicion of bowel cancer. I would give this evil disease a run for its money. I would fight it also, by giving my body the most optimum diet I could. 
I really had this idea that to stop cancer developing, that I could beat it with a good diet. I had read a lot about diet, keeping fit, and cancer. A lot of people, from speaking with them, believed the same.

 
I purposely increased the amount of fresh vegetables and fruit I ate.  The government and health guide lines for cancer prevention, and significantly bowel cancer, was to eat at least five portions of fruit and vegetables a day. That advice had been lost on me in years past, I regularly ate more than that on a daily basis already, now I purposely increased it. Ten to twelve, even fifteen portions, I ate on a daily basis. I really believed the advice, that if one eats enough fresh vegetables, fruit, nuts, seeds wholefood and little or no processed food, keeping active and physically fit,  that I would, and could, stay immune to this disease, even though my own mother had died with bowel cancer.

 
I believe now that an optimum diet can support and encourage a healthy body, optimum fitness and a good immune system, especially important if you are unfortunate to develop cancer, but whether it can prevent cancer, I am still uncertain. The Cancer Research website, states “A healthy diet with plenty of fibre, fruit, and veg, and less processed meat and salt can help cut cancer risk”.


I had no interest in junk food and “ready meals”. I never ate animal fat in large quantities, nor huge portions of red meat. I only ever put extra salt on chips or egg. I cooked sparingly with salt. I cut the burnt bits off my toast and rarely ate barbequed food. I hadn`t smoked cigarettes but for more than a few years in all, mainly so in my teens.  
I`d keep active and vital. I`d remain alert to body changes and be straight to the doctor`s post haste………………. 


In January 2008, I saw a locum at the surgery, who stood in for my usual GP. My usual GP had taken a period of planned leave.
I underwent a medicine`s and health review which was instigated wholly by the new locum. I had simply been to see the locum for another reason. 

 

The medicine`s review eventually lead to a discovery of blood in the stools, (faeces or poo). The locum said that I had been taking diclofenac medication, a pain killer, for a long period, due to a longstanding groin pain, and that anti-inflammatories can cause the stomach to bleed.  For instance diclofenac or aspirin, may cause bleeding in the stomach, which may sometimes show up as blood in the stools.  
However, bowel cancer symptoms may also present as blood in the stools too.

 

Blood in the stools, along with the fact, that I had then told the locum, that my mother had developed bowel cancer at a similar age of fifty eight years, and I was almost fifty eight then, led the locum to issue an Urgent Two Week Cancer Referral for a colonoscopy, to investigate for bowel cancer. 

 

I HAD NOT experienced a “change in bowel habit,” for example unusual persistent diarrhoea or the frequent passing of loose and urgent stools, nor persistent constipation, nor any other symptom of bowel cancer. I had not experienced IBS for a long time. It appeared to have settled. I had no bowel symptoms at all. I was upset and concerned when the locum told me about the blood in the stools, as apart from the groin pain which was fairly longstanding, I felt quite well, only extremely jaded and worn out, by long term groin pain.  I underwent a colonoscopy within two weeks. I underwent a proctoscopy also. A proctoscopy is a procedure whereby a medic, makes a visual examination of the anus and rectum, using an instrument, called a proctoscope, to detect the presence of any signs of disease or polyps which may lead to cancer.


The colonoscopy and proctoscopy showed no sign of bowel cancer or rectal cancer. I was both relieved and reassured. I put bowel cancer right out of my head. A colonoscopy is the gold standard in bowel cancer detection. I believed at the time, that a colonoscopy was a 100% accurate detection of bowel cancer. A colonoscopy is where a tiny camera, passes through the anus and surveys the length and breadth of the colon and rectum looking for polyps or tumours. It is normally carried out whilst under sedation.


A few weeks later, I underwent a planned hip replacement. It appeared, the reason for groin pain was osteoarthritis, the specialist had diagnosed. I had been plagued by groin and hip pain for some time, hence the use of the anti-inflammatory painkiller, diclofenac. 
 Unfortunately, I developed a serious infection known as Clostridium Difficile immediately following the hip replacement operation, whilst I was in hospital. Clostridium Difficile is commonly referred to as c. diff.

 

In major surgery, large doses of antibiotics are given to prevent infection of the wound, during and after surgery.


I was told, that a course of antibiotics for a chest infection, prescribed to me by the locum, in the weeks prior to this surgery, was the reason why c. diff had developed now. The hospital doctor commented that this influx of several types of antibiotics into my body, had caused an imbalance in the gut and that the result was c. difficile.


Clostridium difficile displays diarrhoea, stomach cramps, and fever, a temperature of 38 degrees or more, as part of its symptoms. It is a serious condition and can be fatal and is highly contagious. I spent most of the stay in hospital, alone in a room away from all other patients. I told visitors to stay away, because of the chance of infection. I was treated effectively with antibiotics and returned home eventually.


Four months exactly to the date of the c. diff infection, and six months exactly to the blood in the stools incident, which led to the clear or normal colonoscopy, I developed volatile and persistant diarrhoea, it seemed, just “out of the blue”, and for no apparent reason. I was well otherwise. I had no fever. I had no other symptoms. I had eaten exactly the same food as my husband and he was fine. It was just me.


I went straight to the surgery on the very next day. I was very concerned about this unusual and volatile diarrhoea. I never for one moment related this to IBS. Concern and fear about this symptom, is very the reason why I went to the doctor`s immediately. This diarrhoea was unexpected, with no forewarning other symptoms such as with IBS, for instance, bloating or wind. I was not significantly suffering from stress, which normally was the precursor to a bout of IBS. I felt there was something very wrong.


I had never experienced diarrhoea such as this before. This was an emergency or urgent appointment and I had never seen this GP before. To consult with a GP, no matter who it was, was my principle concern that day.


I stated my case clearly and precisely to the GP. Then without any discussion or questions about my general state of health, medical history, or any kind of examination, the GP on scanning the last consultation I had made, 10 days before, proposed that it was most probably antibiotic-related diarrhoea, as they saw that in my medical records, in that consultation, I had been prescribed a course of antibiotics for a urine infection. 
 

Antibiotics can cause diarrhoea. It is usually mild, and clears up shortly after you stop taking the antibiotics. This diarrhoea had begun days after the course of antibiotics had been completed. I was rather taken aback at the confidence and speed of the GP`s diagnosis, when this diarrhoea, to me, was completely foreign, and that a diagnosis was made, it seemed, so lightly, with so little consideration to any other factors.  Antibiotics were the cause, most likely they thought, of the diarrhoea. 

 

The GP stated that antibiotics can cause diarrhoea. I was dubious as to their diagnosis immediately, as this was not my normal experience at all, when taking antibiotics, and I had completed the course some time before.  Additionally, I had taken several courses of antibiotics, for urine and chest infections over the years, but had never experienced diarrhoea this before. I did not like to challenge the GP`s diagnosis. I felt slightly intimidated, but also I held a high respect for a doctor`s word.


I specifically pointed out to the GP, who did not know anything about my medical history, the Clostridium Difficile episode which I had experienced four months earlier, following the hip replacement, which displays diarrhoea as a symptom. Could it be a reoccurrence of c. diff, I asked? Was this a possibility?

 

I never mentioned the clear colonoscopy to the GP, carried out 6 months before. It did not enter my head even remotely, as a cause, I mean bowel cancer. I believed I was completely safe. I`d had a “cut and dried” normal outcome, with the prior investigations, six months earlier. The medics had been fastidious and conclusive. I felt completely safe and reassured. Why! I followed an optimum anticancer diet, I kept to a reasonable weight, took no heart or diabetes medication and had optimum blood pressure readings, and recently underwent a normal colonoscopy and blood tests. I believed I was completely safe.

 

The GP said that they would organise a stool test to rule out c. diff. The GP failed to enquire whether I had any other symptoms of Cloristidium Difficile such as, fever or abdominal cramps. 


The GP offered no examination, either abdominal or rectal, nor blood test of any kind, nor a Faecal Occult Stool Test, checking for blood in the stools, one that would test for bowel cancer. Indeed the GP did not discuss any other possibilities and no other advice at all was given. They did not appear to be unduly concerned at all. By the GP`s manner, and lack of enquiry, I felt it was an insignificant matter and that it would probably settle soon.

   
The volatile and urgent diarrhoea continued every day, at around 6-8 times per day, sometimes more. It didn`t settle. It appeared to be a set pattern now. It felt as if something had changed radically in my body. I felt out of control of my bodily functions. 

 

I returned to the surgery after around a week, the aim, to discover the results of the bacterial stool test and to find out what the cause of the continuing diarrhoea was, and specifically if it was c diff, should I need to take antibiotics for it, or was it something else? Would it require mediation, or should I let it run its course?

 
My original GP was now back working at the surgery after prolonged leave, and I saw them. I again, emphasised that the diarrhoea was happening on a daily basis, at about the rate of 6-8 times, when normal bowel function for me was once or twice daily.


The GP said the stool test was not back yet, but they would phone the laboratory for results while I waited. The laboratory results showed a trace of salmonella.  Salmonella is a bacterial infection normally passed on from infected food or infected surfaces, which may also cause diarrhoea, stomach cramps, nausea, vomiting, and a high temperature. I had not experienced any of these other symptoms. Again the GP failed to ask me if any other symptoms, had or were, being experienced.  I recalled to myself again, that I had eaten exactly the same as my husband and he was unaffected.


A retest was necessary to establish whether there was a bacterial infection causing the diarrhoea, the laboratory people said. Would salmonella really last that long anyhow, I thought to myself? I had no other symptoms such as nausea or fever that accompany salmonella.  Apparently, salmonella normally improves within 4 to 7 days, without any treatment whatsoever.  No medicine or antidote was offered to relieve the diarrhoea and no examination took place.  No blood test was offered either.  A blood test is carried out in cases of suspected cancer as it may show that the patient is anaemic.  Anaemia is caused by lack of iron in the blood. Not all patients with cancer, show signs of anaemia.

 

Anaemia has several causes, and bowel cancer is one of the diseases when anaemia can occur, because of loss of blood caused by internal bleeding of tumours in the bowel or rectum.  Anaemia`s symptoms can be, unexplained tiredness, lethargy and fatigue, a pale complexion, shortness of breath and heart palpitations, amongst many.

 
Back to the story…… 
No other advice was given, nor comment made, by the GP. I left the surgery with no more idea of what was happening to my body, than I did before the consultation had taken place. I was concerned. I was shaken. This was not normal for me, but neither doctor had seemed too concerned or perplexed. I was beginning to feel uncomfortable, and felt slightly adrift, when all my previous dealings with the medical world, had always been confidence-boosting, reassuring and positive. 


Was I being over dramatic, worrying too much? I now was beginning to feel as if I was making a fuss about nothing. I had said that I couldn`t return to the surgery for two weeks, as I was taking a pre-planned holiday in Cornwall, but would return immediately to the surgery, once I arrived home again from my holiday. I took the planned two week holiday throughout which, the diarrhoea continued on a daily basis, 6-8 times, volatile, urgent and extremely lowering indeed.  It was a very miserable state of affairs and I was forever looking for the next loo, as the diarrhoea was tremendously urgent each time. I felt “out of control” of my body`s bowel function now. 


I returned post haste to the doctor`s on return from my holiday. The GP said the retest of the stool sample, showed no bacterial infection whatsoever, salmonella, c.diff or otherwise. It was completely clear. I stated clearly again, that the daily, volatile and urgent diarrhoea was ongoing, this was now almost a month of daily, urgent and persistent diarrhoea. It was a mystery to me.  “What was it? It is as bad as ever, occurring 6-8 times every day!” I asked. This was almost a month of daily, volatile instances of diarrhoea. 
The GP answered, you`ve had c diff but you know you do suffer with IBS (irritable bowel syndrome). I agreed I had done, but I never for one minute related this bowel movement to IBS.  
Numerous patients, from what I have deduced, in my research, have believed that they have IBS when they really have been suffering from bowel cancer. 
 It is often a first or second line of diagnosis fairly commonly alluded to in surgeries, when presenting with loose stools or persistent diarrhoea, and or constipation, it appears.                 
Some patients may have had, like I had, in times long gone by, (i.e. twenty five years ago for me), a specific investigation for bowel cancer, by colonoscopy or barium enema, to rule out bowel cancer, when they had suffered with a change in bowel habit (diarrhoea or constipation), severe abdominal pain and bloating etc, and were subsequently diagnosed with IBS.

     
These patients are often not treated so rigorously when newly presenting with a change in bowel habit, later on in their life - a change in bowel habit, from what I can deduce, which the patient regards as not usual or normal, even by IBS standards.

 

Then I have heard of many cases of bowel cancer sufferers, who have never been investigated extensively for a change in bowel habit and or severe abdominal pain, or constipation, but are still being given an IBS diagnosis. 
Back to the story………

 
Again there was no abdominal nor rectal examination, nor blood test offered. No advice, no discussion concerning the possibility of any other symptoms, no discussion of family history being bought up, though it had been talked about in the far distant past, and was recorded in my medical notes about mother`s bowel cancer, no suggestion other than that of it being IBS. 

 

There was no opinion as to what else it might be, if anything. I was not given any advice to return to review the symptoms.  I was beginning to feel as if I were a nuisance, a fraud and was taking up the GP`s valuable time. I felt as if I was always there at the GPs. I was getting nowhere I felt. I was just taking up the doctor`s valuable time.   
The GP said they would send off another stool test to double check for bacterial infection and left it at that, and alluded to nothing else. 

 

In my mind I was completely reassured by the clear colonoscopy, 6 months previously, which had eliminated bowel cancer. It had been extensively investigated.


I also trusted completely, that the GP was totally reassured too, by the recent prior, clear colonoscopy carried out by the stand in, in their absence. The clear colonoscopy was never discussed, or bought up by either of us at any consultations, either then, or at any other time, until after the diagnosis of bowel cancer was received at the surgery, ten months later. 
I assumed that no news was good news, when I heard no more about the test results from my GP, I treated my ongoing diarrhoea with the meberavine, the IBS medication, of which I already had a supply at home.


Over the next few weeks, indeed, three weeks later, I consulted about another completely unrelated matter, a lump on the sole of my foot which was making walking difficult. The GP showed no concern or interest in the previous recent stool investigations for diarrhoea.     

 

The symptom, of persistent diarrhoea, which I commented was very active at the past consultation, nor the final bacterial test results, were not mentioned or reviewed, and so I did not broach the subject again. I felt further reassured, and also a bit of a nuisance really. The GP must believe this diarrhoea is IBS-relate, I decided. I am just worrying over nothing.
I visited and spoke to the GP at regular intervals over the following weeks and months, with now severe abdominal pains and a urine infection. 


At around 8 weeks after the beginning of the persistent diarrhoea, I suffered extremely severe abdominal pains, along with, what appeared to be a urine infection. I consulted with the GP on three consecutive days, once on the phone and twice at surgery consultations, about severe abdominal pain, along with the symptoms of a urine infection i.e. pain on passing urine. In fact I took to my bed, because the abdominal pain was so severe. This was unknown for me before. I was very concerned as the abdominal pain was unusually severe, for a urine infection. I was prescribed antibiotics and a stronger pain killer, for the abdominal pain, named Tramadol. Urine or kidney infections can cause severe abdominal pain but bowel cancer can cause severe abdominal pain also.  Tramadol is a medication which can cause constipation, but bowel cancer can also cause constipation.   

 

I became constipated. I told the doctor that it was completely unusual for me to be constipated, that I ate too much fruit and veg and wholemeal bread and cereal, but they insisted that the Tramadol was the cause of the constipation.


Then, and also completely unusual for me, quickly following the constipation, were haemorrhoids (piles), which eventually bled. These new symptoms appeared at approximately five months following the onset of the loose and volatile stools; and then later, after a couple of months more, nausea and indigestion began.  I could not understand why. I had never suffered with these symptoms before and my eating habits had not altered at all.  Later, I learned that bowel cancer can cause nausea and indigestion. This is particularly evident when the bowel is blocked or partially blocked, by a growing tumour, causing constipation and bloating and nausea.


Advanced bowel cancer can lead to indigestion and nausea also. Usually, when cancer has spread to another organ, commonly the liver. Some patients may then feel nauseous and begin to suffer with indigestion.


I returned again and again with the same symptoms of constipation and piles. I was eating IBS medication like sweets, I asked for a repeat meberavine prescription, when normally, a supply would last many months, sometimes going into well over a year, eighteen months or more.  

 

I wasn`t sleeping well, I felt very low and tired and worn out. I was worried about financial matters, as I felt I would never feel well enough to work again. I felt quite ill. I was lethargic and depressed. I “dragged myself” through life, wondering when I would ever feel better again. I continued to fill myself with healthy food - masses of fruit and vegetables, nuts, lean meat, fish, eggs and cottage cheese - my diet was indeed excellent. 

 

I discussed the sleeplessness and worries over financial matters with the GP and they prescribed Amitripyline to help me sleep. Amitripyline is an anti-depressant, which is also a muscle relaxant, and efficient pain reliever and is commonly given to people with long-term pain, who find it difficult to sleep. It relaxes the body to encourage sleep. Amitripyline can also cause constipation.


Anusol cream, a treatment for haemorrhoids, was prescribed intermittently, covering a time of almost five months, several times over. Anusol had been placed on repeat prescription, at the initial presentation of piles. No examination for piles was offered or made at that first presentation. Anusol cream is meant to shrink the piles, diminish itching and soothe the pain.

 

The piles continued to persist, so after using a few repeat prescriptions of anusol, the stronger hydrocortisone cream was prescribed when the piles had become visible, hanging from my anus.  Returning to the piles, I have never experienced piles like this before. Even though I assiduously used the cream, the piles returned again and again. I couldn`t understand why. Perhaps it was because I was still suffering with constipation, though I still had IBS as well.

 

I had not been examined at this point, for haemorrhoids, as no examination was offered in the first instance. So approximately six weeks after the first presentation of haemorrhoids had taken place, when they appeared to be worsening, I asked the GP to take a look, to see if they thought it to be normal. They made a visual inspection, as I stood in the surgery room, bottom half unclothed. There was no physical, rectal examination of the anus and rectum. The haemorrhoids, the GP now diagnosed, as thrombosed, and prescribed more hydrocortisone cream.


My constipation was, said the GP, a side effect of the use of painkillers (tramadol) for abdominal and groin pain, and haemorrhoids were a result of constipation.  

  • Some medications may cause constipation.  

  • Lack of fibre in the diet can cause constipation. 

  • Lack of sufficient fluids in the diet can cause constipation. 

  • Lack of exercise can cause constipation.  

  • A change in routine, for instance a holiday, can cause constipation.

  • Bowel cancer can cause constipation. 

I rarely, if ever, was constipated, as my diet continued even then, to consist of masses of fresh fruits, vegetables and wholefoods. I always cooked from scratch and ate the healthiest diet I could. This constipation was determined to return and return, even with treatment, for weeks and months. 


I had always worked physically hard and was extremely active, probably more so than a lot of people my age. My weight was normally at an acceptable level. I had no need for blood pressure medication, water pills or diabetic preparations.  
Back to the story…….  


The GP prescribed Dulcolax a medication in pill form, and then Fybrogel a drink, both for the relief of constipation, over the next few months. I was eating more and more fruit and fibre as well as these medications also, but it made no difference. Both symptoms, constipation and piles, returned stubbornly. IBS was active as well.


My life was a vicious circle of constipation, painful piles, interspersed with loose volatile stools, severe abdominal pains and increasingly, nausea and indigestion. For nausea, when I presented with it, at around six months after the onset of persistent loose stools or diarrhoea, a medication was prescribed in pill form and then omeprazole, a medication to combat indigestion. The GP did not explain to me, the reason as to why they believed I was suffering with indigestion and nausea. I felt so low, I just took the medication anyway. I felt as if I had lost all control over the habits of my body. I felt ill but didn`t know why.


At around the period of time, which was sixteen weeks after the beginning of the persistent diarrhoea, I coincidentally, underwent an MRI scan, for a completely unrelated problem- the longstanding groin pain. This scan took place at about six weeks before the persistent constipation and piles began.

 
This was a scan on the pelvis. The scan proved normal and unremarkable.  Blood tests carried out by the rheumatologist who was investigating the long standing groin pain. At first, the results were suspicious, he had commented. He was concerned he might be missing a lesion. As they were not quite normal, they were repeated, but nothing remarkable was found. This I found all very reassuring, again.

 
In desperation, after 10 months of continual, volatile and persistant diarrhoea, IBS symptoms, constipation, haemorrhoids, abdominal pain, and then indigestion and nausea, I saw the GP and asked to be sent for an investigation for bowel cancer.  I had decided I would not leave the surgery that day, without an urgent referral being made.

 
At this consultation, the GP offered to examine me, did a rectal and abdominal examination. It was the first rectal examination that had been offered since the beginning of all these symptoms. I could not call to mind, at that point, how long all these bowel problems had been happening. 


The GP commented that there were piles, then went on to suggest, that the cause of all these continuing symptoms now, might possibly be Diverticulitis, a disease of the colon, which may also cause diarrhoea, and abdominal pain. I decided not to be intimidated or put off. I stood my ground with the GP and insisted on a bowel investigation. Two weeks later, I was diagnosed as having a cancerous tumour, situated at 4 inches inside the rectum. The specialist who carried out the procedure to investigate the bowel, informed me and my husband that there was a cancerous tumour inside the rectum, shortly after I had recovered from the procedure. He asked if we wanted to know anything. We replied “No,” and thanked him and left quietly. We were shocked and stunned and drove the long journey home in almost complete silence, our minds racing and hearts sinking.


I immediately changed doctors, after a final consultation with them, I believe it took place the next day, where the doctor conveyed the news they had received by email, that morning, the news that I already knew, that I had rectal cancer. I replied, that I knew already. I specifically asked the GP to check the date of the initial presentation of piles and constipation. They said it was about four and a half months prior. Other items were discussed.  
In one of the days ahead, I began suffering great pains in the rib area and suffered severe breathlessness. My husband was at work, so I drove myself to the doctor`s, as it was late on a Friday afternoon, whereupon, I collapsed in the reception, whilst telling my story. 

 

Another doctor saw me and arranged for me to be admitted into hospital. My husband drove me there and I was finally admitted at about midnight. 


On the following Monday, as there were no scan facilities available on the weekend, I underwent an MRI scan, and was discharged from hospital.

 
A few days later, my new doctor at the surgery asked me to see them for the scan results. The scan showed that there was a tumour situated four inches inside the rectum, and also that my liver was already affected too. I had secondary rectal cancer. I had hoped and prayed that the cancer had not spread as soon as the specialist had informed me of the rectal tumour. I had that hope in reserve,  that hope, that prayer. We were both devastated. We said nothing, only blankness and disbelief at what had evolved. We thanked the GP. We left. 

 

At one time the cancer was in the lungs also. I saw the oncologist very quickly. I felt as if I was in a dream. All normal life had departed. At the first meeting with the oncologist, I was told that there was not much chance of survival for me at that point. I had completely understood that right from the beginning. I have never been in denial about the gravity of my illness, the seriousness of the situation.

 
When cancer has spread from the primary location, in my case the rectum, and travelled via the walls of the rectum, into the lymph nodes, into blood stream to other organs and set up in a secondary organ in the body, the cancer is known as advanced. It had travelled to the liver in my case. The disease is then referred to as METASTASTIC cancer.  
Once cancer has developed to this stage it is increasingly more difficult to treat and often is referred to as ADVANCED.

 
The oncologist was extremely dogmatic, very blunt and honest, in his appraisal of the situation, in that he believed that I had a very poor chances of overcoming this disease for any substantial length of time. It was at Stage 4. A cure was never spoken of. He offered chemotherapy, but admitted openly to me, that it was truly, “a long shot”.  
I understood, without treatment of a trial of chemotherapy, that six months was given as my life expectation.


He could see my face, he could read it, now in utter confusion as to why I had developed this disease when I had said I had tried so hard to stay fit and healthy. He spoke the words to me, “This is not your fault, you mustn`t blame yourself”. I have asked him several times over, why he thought I have developed bowel cancer, and he always replies the same,” He does not know.” That is the hard part, not knowing.

 
I told him that I didn`t want to die now, that I was too young to die. That I would have chemotherapy and do anything I could to try to overcome this disease. I was not frightened of a fight. I was angry, about developing cancer, and the seemingly unfortunate way, through former extensive testing, whence I had been made to feel so reassured, when in one way or the other, I should not have been. I was angry, and my anger against the cancer made me stronger. It always has done.

 
I persevered and underwent chemotherapy courses, three times over, and have altogether, had five cancer related operations. I underwent an ileostomy and later had it reversed. 
When the rectal tumour was removed and clinically examined and investigated, it was found not to be hereditary in kind, such as in the case of Lynch Syndrome. So I did not inherit this disease from my Mother, via Lynch Syndrome. There has been further recent research into cancer and the reason why some cells mutate, while renewing, as they have to, as time goes by. Why cancer cells grow and then tumours develop in the body. Perhaps there may be other hereditary cancers too, which have not been identified yet.  
Back to the story…………


These treatments and operations covered the first three years following diagnosis in July 2009, following pretty much one after the other, within a few months of each other. I lived in a surreal world throughout that time, but my senses and way of life has changed forever. I am not the same person I was. I am much stronger. 

 

Miraculously, I have had clear scans and blood tests for three years, since the final liver resection, in 2012. I have no idea how long this will last. It is extremely hard living with advanced cancer.


What I have learnt from this experience is that, diagnosing bowel cancer can be difficult, especially if the protocols of examination, tests of elimination and review of symptoms, are not carried out. Also the NICE guidelines for the diagnosis of bowel cancer should be strictly followed and adhered to.  


If blood tests, (for anaemia), and rectal and abdominal examinations, faecal occult tests, don`t take place at the earliest opportunity, and then very importantly, a “safety net” system, to review and monitor existing persisting bowel and abdominal symptoms, very carefully, (particularly persistent diarrhoea, piles or constipation, or rectal bleeding, or blood in the stools)) in patients, and concluding in colonoscopy and scans, are not carried out, invariably cancer will not be ruled out, and will be allowed to spread to other organs in the body. 
The result of a late diagnosis is Stage 3 or Stage 4 bowel cancer, when patients will often require multiple chemotherapy courses and surgeries.

 
When bowel cancer has spread to the liver and lungs for instance, as it commonly does, it can be difficult to treat, but survival rates, even with Stage 3 or 4 cancer are improving all of the time.

 
Cancer patients are sometimes anaemic but not always so, but a blood test for anaemia is a useful indicator of the existence of bowel cancer in many patients.  


Until recently, the NICE Guidelines promoted these instructions:-
 “RED FLAG” Symptoms, persisting between THREE and up to SIX weeks and over, should always be  referred and investigated for bowel cancer URGENTLY, and be checked by colonoscopy, once again, EVEN if a fairly recent colonoscopy or faecal occult stool test has shown a normal result. 


Remember colonoscopies are only 90% accurate, Faecal Occult or stool tests for bowel cancer, are less accurate than that, but still often diagnose bowel cancer through the National Bowel Cancer Screening Tests, at sixty and over.
“RED FLAG” Symptoms can be any of the following:-  
1) Persistant, frequent, urgent, loose diarrhoea or stools 
2) Blood and or mucus, in the poo/stools  
3)  Rectal bleeding 
4) Severe abdominal pain  
5) Unexplained weight loss, breathlessness or fatigue  
6)  Persistent constipation or haemorrhoids (piles)  
7) A feeling that something is left behind, after evacuation of stools or poo. 
8) A lump in the abdomen 

 

These simple symptoms may mean nothing serious, unfortunately, they too can be the symptoms of bowel cancer, which kills over 16,000 patients a year.  
Since my experience with bowel cancer, I have studied and read much about bowel cancer.
Apparently, only around 10% of patients are diagnosed at Stage 1, when bowel cancer is mostly totally curable.


Around 90% of patients are diagnosed when the cancer has already spread, making treatments and cures less successful.

 
This majority of the 90%, having more advanced cancers, usually at Stage 3 or Stage 4, can be made up of:- 

  1. Patients who may not have taken their symptoms seriously or been unaware of the symptoms of bowel cancer and not consulted with their GPs early enough.

  2. Some patients may have symptoms but are too frightened or embarrassed to consult with the GP.  

  3. Then some patients may consult with their GP immediately but their symptoms are not investigated for bowel cancer in the first instance, but are diagnosed commonly, as simple benign conditions such as constipation, piles or IBS. Patients are then wrongly reassured and do not return as a matter of urgency. They return sometimes months down the line, when the cancer has advanced to Stage 2, 3, or 4.

  

  1.  Patients may not be given any advice to return, or a plan on the way forward. Commonly, no review system has been put in place, according to other late diagnosed patients.  

  2. A GP may go down completely the wrong track, at the very beginning, when time is so crucial, and reach a wrong diagnosis, which is never reviewed.  

  3. A wrong diagnosis can be IBS, simple constipation or haemorrhoids, a kidney infection, diverticulitis, antibiotic- related diarrhoea, coeliac disease, inflammatory bowel disease or anaemia, are ones which come to mind.  

  4. Some GPs never put the NICE guidelines of bowel cancer diagnosis and investigation into action, right at the beginning of presentation of symptoms.  

  5. Many patients are diagnosed with advanced bowel cancer on hospital admission to A&E. These patients may have made numerous visits to their GP, with the symptoms of bowel cancer, other patients have never visited their GP at all, with the symptoms. 

 

Recently on 10 July 2015, it was stated by NICE and the NHS Chief, stated that there will be new guidelines on Cancer Reform that they hope will lead to an 80% number of cancer tests, with all patients given a definitive diagnosis within a month, to enable treatment to be started more quickly. 


The report sets out a 5 year plan for health service, with measures to include:- 

  • 95% of patients to be given a cancer diagnosis within 4 weeks. 

  • Patients to self-refer themselves for vital tests 

  • GPs given the power to order specialist tests such as CAT scans 

  • An 80% increase in the number of cancer tests being carried out. 

  • Major investment in new radiotherapy equipment.    

  • National action plan for reducing smoking and obesity. 

  • Proposals also include a dedicated call system to enable patients displaying symptoms to bypass their GP and refer themselves for tests. 

  • GPs will also be given stronger powers to bypass referral by sending patients directly for tests.  

  

  
What I have discovered since my diagnosis is, that:-
Colonoscopies miss 10% of all bowel cancers.  This may be the result of Technical or Human error, or perhaps the cancer may have been a particularly Aggressive and Rapid type. 

 

Therefore, if any RED FLAG symptoms continue or reappear again, after a clear colonoscopy, and persist, then bowel cancer must be investigated for once more, and eliminated or diagnosed.


Stool (poo) tests, the kind used in National Screening Programmes, investigating for blood in the stools, have a poorer success rate of detecting cancers, than that of colonoscopies. These are known as “Faecal Occult Stool Tests” and are those which look for blood in the stools or poo, which may be caused by a tumour. 


If symptoms flare up, or continue after a Faecal Occult Test, bowel cancer must be investigated and eliminated again. The second stool test I underwent was to test for bacterial infection in the stools/poo, for infections such as salmonella, c diff or e coli for instance. This test does not does not test for bowel cancer. 
 
It is disputable whether my GP was reassured by the first clear colonoscopy, as I was, which was carried out at the time they were on leave. If they had no knowledge of the recent prior bowel investigations, this GP did not appear to be unduly concerned about the bowel changes I was exhibiting.

 

What I have learnt is that when you are concerned about symptoms, and you are not certain whether they are serious or not, it is valuable to keep a symptoms` diary and give a copy to the GP. This will act as a record of what has passed between you and the GP, and will establish the date or onset and severity of symptoms. Continue to consult with the symptoms, if they do not settle.

 
The GP should put copies of all information about your condition in your medical records, so it will be there in the future if you see GPs other than this one, and if you still are suffering the same symptoms. It is imperative to be persistent, even if you feel intimidated or think you may be worrying unnecessarily. This is your body and your real symptoms. If they are continuing after a few weeks, firmly say so and ask for an in depth investigation. If you feel the diagnosis made, is an educated guess, rather than a disciplined appraisal that includes a strong element of elimination, see another GP, for a second opinion. 
GPs are very busy and a 10 minute appointment may miss something on which your life depends. Bowel cancer requires a decisive and thorough investigation as soon as the symptoms are discovered. Any undue or unnecessary delay for whatever reason, may be the difference between life and death. 


Be polite, be direct and be specific about your symptoms, and write your symptoms down in a comprehensive fashion and give a copy for the GP to keep in your medical records.

 
Always ask the GP if you might need to return again, concerning these symptoms, or are they completely satisfied with their diagnosis.

 
Ask the GP what their diagnosis is.

 

If you are worried it may be cancer, say so.  

 

Ask them why they don`t think it is cancer. 

 

That is why it is good to make a list, and take a partner or friend with you, so that you do not forget what you need to ask, and it can be used as reference when seeing other GPs, locums or hospital doctors, at later times. A partner, spouse or friend can encourage and support you in presenting with symptoms and helping you explain your feelings, to a GP. Sometimes a patient can be naturally reserved, or emotional about their symptoms. A trusted partner or friend, will help ground and support you and get your message across in the best way. 
 

Scans:- 
MRI scans may miss tumours, when they are specifically not being used to search for tumours, but are being used for other non-related complaints, which are coincidentally being investigated at the same time. 

 

Retrospectively, a radiographer was asked to study the MRI scan, which I underwent, at sixteen weeks to the onset of my reported diarrhoea. The scan was carried out for an unrelated issue of groin pain. 

 

A cancerous tumour was recognised on this MRI scan, retrospectively. It was assessed as at Stage 3 advanced cancer. This MRI scan was undergone on the 12 January, 2009, the symptoms of diarrhoea began and were presented with on the 10 September 2008. The first clear colonoscopy was carried out on 3rd March 2008.

 

Stage 3 means that the cancer cells may have penetrated the colon or rectum wall and spread into the lymph nodes from where the cancer cells enters the blood stream. It only took sixteen weeks from the onset of diarrhoea, to reach this advanced stage of bowel cancer, in my case. Some cancer tumours are slow-growing over many years. 
Not all bowel cancers advance this quickly, unfortunately mine did.

 

When the rectal cancer was finally diagnosed, after ten and a half months from the initial RED FLAG, symptom, a persistent “change in in bowel habit”, being presented to the doctor, the tumour was diagnosed as Stage 4 advanced cancer with multiple metastases on surfaces of the liver. Then later, at one point, metastases were found on the lungs too.   
Liver surgery for secondary liver cancer is performed extensively now. The liver is the only organ in the body which has the ability to grow back to its former size, within a few weeks and months.  
It is important to be as fit as possible to undergo liver surgery. 

 

I have had 70% of my liver surgically removed and it has grown back well.

 
I was extremely fit otherwise, when I developed cancer, and believe that this is a significant reason why I was able to undergo the treatments and continue to undergo the operations and so to live on, when all seemed lost, on diagnosis. The oncologist believes this too. The healthy lifestyle I had adopted for most of my life had supported me well in the fight against the cancer, since being diagnosed, enabling me to get through the many treatments and operations I have undergone.

 

The two main side effects, I encounter as a bowel cancer patient are chronic bowel problems such as diarrhoea and constipation. This is because of rectal surgery, and for others, bowel surgery, which alters the way our body functions works. In many patients though, bowel habits settle within time.  


For some patients, extensive surgery means the need to have a permanent colostomy or ileostomy bag, as their normal toilet function is now lost.  


A major difficulty in my life is the pain of “adhesions”.

 
This is where, after multiple abdominal surgeries, surfaces of internal organs grow together, where they are not meant to, and cause pain, on movement. Nothing can be done to eradicate this problem for me, as the problem is too extensive.


The survival rate for patients diagnosed at Stage 4 bowel cancer is 7%.  
When diagnosed early, at Stage 1 to 2, patients have a 93% survival rate. 
I am one of the 7%, now 6 years, after a Stage 4 diagnosis. All but a miracle!

 

This article was produced by, Patricia Jennings. 

How to Recognise the Symptoms of Bowel Cancer.

How to Avoid a Misdiagnosis, or Late Diagnosis of Bowel, or Colorectal Cancer.

 

by Patricia J. ( Member of the Cornwall Bowel Cancer Support Group. )

 

This is a piece written by a woman, diagnosed in the Terminal Stages of Colorectal Cancer, in July 2009, at the age of 57, despite numerous trips to the GP in the 10 months before.

I am here to tell the story. I am still going strong. Please do not let my experience frighten you or make you despondent, because my intention is to support and guide you.

The Common Symptoms of Bowel Cancer can be one, or any combination, of the following symptoms. Similarly, on many occasions, these symptoms can also represent a simple, benign (non life-threatening) condition. The Trick is, to find a GP who is able and willing, to decipher the difference. Unfortunately, misdiagnosis and late diagnosis with Colorectal cancer is extremely common.

 

Consider this:

  1. Early diagnosis can often result in the total cure of cancer.
  2. Delayed diagnosis, for whatever reason, may require treatments such as chemotherapy, radiotherapy and, or surgery which may or may not cure or regress, the cancer.
  3. Late diagnosis can result in death. Cancer Research UK, say that in 2011, 15,659 deaths were the result of bowel cancer. It also says that Bowel Cancer is the second most common cause of cancer deaths in the UK.

Symptoms. Loose, persistent stools, urgent and diarrhoea-like.

Rectal bleeding.

Persisting constipation.

Persisting loose stools, alternating with persistent constipation.

Persisting piles (Haemorrhoids), bleeding or not.

Persisting severe abdominal pain.

Anaemia, breathlessness, unexplained persistent fatigue and tiredness.

Blood and or mucous in the poo.

Blood in the toilet pan.

Difficulty evacuating poo, or a feeling of something being left behind.

Lump felt in rectum, or abdomen, especially on the right side.

Abdominal bloating, wind (flatulence).

Loss of appetite, unexplained weight-loss.

Nausea, feeling sick or vomiting.

 

A patient with Bowel Cancer, may only experience one or two of these symptoms, at the onset of bowel cancer. The most common and significant symptoms, are loose persistent stools/diarrhoea, and or, rectal bleeding. Some may just have abdominal pain and unexplained fatigue or tiredness. Some may experience unusual, persistent constipation and, or piles (haemorrhoids).

 

Any of the above symptoms, especially if there is loose stools or rectal bleeding, including bleeding piles/haemorrhoids, if they persist for more than 2 to 3 weeks, will require a thorough investigation by a GP, to rule out bowel cancer. It is best to establish the initial time of the symptoms onset. The easiest way to do this, is to write down, jot down, or record the dates and symptoms. It is easy to do if you have a computer and printer, otherwise, hand-write a diary of the dates, symptoms and their frequency per day, in the case of diarrhoea bouts, record the number of times per day, it is extremely useful to illustrate to the GP your ongoing, medical condition. Accuracy, will give the GP a very clear picture of what is happening. It is equally as good, to make a handwritten diary and photocopy it. Keep one for yourself and give your GP the other copy to read, and ask them to place it with your medical records.

 

When these symptoms are presented to your GP, they should normally ask you questions about your general health and ask how long you have had these symptoms. They should ask you about the possibility of other symptoms from the above list.

 

The GP should know what your current and recent prescription drugs are, but write them down also, as you may see a different GP or a locum, when presenting with these symptoms. Also write down, non-prescription drugs, which you may be taking. Do not accept a diagnosis where the GP bluntly asserts, that you are too young to have bowel cancer. Cancer Research UK states that bowel cancer in younger people is on the increase.

 

A patient should give the GP accurate and detailed facts. It is always best to write down clearly your symptoms, indeed everything that is affecting you at present, i.e. possibly unexplained loss of appetite, fatigue, abdominal pain, or experiencing piles, when it is not normal for you, and not having altered your diet or personal habits. Be confident and be direct. Remain persistent. Do not leave the GP`s consulting room, until you feel you have acceptable advice, and “a plan of action” from the GP. Do not think that you are being a nuisance, or making a fuss, and that your symptoms are probably unimportant.

 

These symptoms are very important, they may well be the common signs of bowel cancer, but remember, they may also be simply an easily treatable condition, which is not life-threatening. Remember, bowel cancer always is. The most important outcome of the consultation, is that you understand clearly what will happen next, be it a straight forward 2 week Urgent Cancer Referral, to see a specialist, or whether you and the GP, have agreed on a “Monitoring Period” of a week or two more, to enable the symptoms to resolve on their own, if that is what they are going to do. Each patients case may follow a different method of diagnosis, but all methods should culminate in the earliest and most beneficial timely diagnosis, if the problems are the result of a malignant tumour or growth.

 

If you do not feel confident in your GP`s manner, or find difficulty in making yourself listened to, or are in anyway concerned about responses from the GP, ask to see another GP, with whom you can feel confidence in, and feel comfortable with. There is no problem with this, as it is your right to see another if you so wish. You do not have to give a reason for doing so.

A GP should, especially with rectal bleeding and Haemorrhoids, offer to give you a “digital rectal examination” to feel for any unusual lumps, (in a gloved finger), which may be the signs of a growth or tumour. A GP should examine your abdomen externally also. If they do not offer to do these examinations, ask why.

 

A GP should, especially in cases of extreme fatigue, tiredness and rectal bleeding, arrange for a blood test, to rule out anaemia, but remember, you may not be anaemic but may still have bowel cancer. Similarly, you may have anaemia but not have bowel cancer.

If you experience blood in the stools, the GP may well arrange for a faecal occult test. This is the type of poo test that is now sent out to all patients, when they reach the age of 60, and is used to screen for bowel cancer. It's aim is to recognise whether there is any blood in the stool, which may be minuscule and not evident to the naked eye.

 

A GP should ask, or if they don't, you must tell them, about any family history of bowel cancer that you are aware of. It may be in your records, but they may have forgotten, or perhaps not be your usual GP.

 

Your GP should consider carefully all the facts which you have made them aware of, and then make a decision, either to refer you for further investigation, or prescribe topical treatments, i.e. haemorrhoid medication in the instance of piles, and put in place a strict, time-sensitive monitoring regime. This system will mean that you must return to the GP in a certain set, time-period, in order to review the symptoms, as to whether they have resolved or not.

 

If any of these symptoms continue past the period of 6 weeks, the GP must refer you to a specialist for further investigation. An investigation will normally consist of a procedure known as a colonoscopy, which will investigate for growths or tumours in the rectum or bowel.

The National Institute for Clinical Excellence - NICE, has laid down guide lines for the diagnosis of bowel cancer, which all GPs must follow. There is much information to make you aware of the symptoms of bowel cancer. The www.beatingbowelcancer.org is a main website for questions about bowel cancer symptoms. Another excellent website that was set up by the journalist Lyn Faulds-Wood is www.bowelcancer.tvThis website is very informative and was the original bowel cancer awareness website, set up after her own bowel cancer experience. There are very informative videos on this site, detailing real patients stories. There is also a guide in which you can check whether you have the symptoms of bowel cancer, or not, but never just rely on internet websites for diagnosis, always refer all of your symptoms to a good GP. 

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