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 The Oesophageal Patients' Association

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Oesophageal Cancer Awareness Campaign
We believe that earlier diagnosis is crucial for achieving better results for patients diagnosed with oesophageal cancer, so raising public awareness of possible warning signs is very important.    On Saturday 28 August 2010 we made a number of media interviews supporting the concerns raised by Cancer Research UK about the rise of oesophageal cancer amongst men.   You may have to wait for a minute or two for these to download:

Radio_David Kirby  - Radio 5 7 35 28 Aug 2010.mp3

Radio_Larry Rees - Radio 5 8 36 28 Aug 2010.mp3

BBC News 24


We support the Association of Upper GI Surgeons (AUGIS) in their  Awareness Campaign and have issued the following press release:

For patient stories, click here

 

Mystery Rise in UK gullet cancer

 Surgeons are worried about a rise in cancer of the oesophagus, the muscular tube that takes food from our throats to our stomachs. 

Gullet cancer is now the sixth most common cause of cancer deaths in England and Wales, and every year it kills 6000 people.   So it is a serious health problem.   The cancer affects men, usually over 40, more than women, but there is a striking difference between how it has risen in this country, but fallen in France.   And the worrying rise also contrasts with lower rates of deaths from cancer in the nearby stomach and bowel.

 There are in fact two types of oesophageal cancer, both of which are linked to smoking and not eating enough fruit and vegetables.   Squamous cell carcinoma, where the cells on the surface of the flesh are affected, has excess alcohol consumption, especially when smoking, as a risk factor;  adeno-carcinoma, which probably accounts for nearly all the increase, tends to be associated with obesity and heartburn, when acid from the stomach damages the gullet.    But some people contract the disease who do not fall into these categories.

 The Government’s Chief Medical Officer, Sir Liam Donaldson, drew attention to the problem in his annual report in 2008.  He called for research, and for better public information about the risks.

 The first symptoms are normally food sticking in the gullet, pain, or difficulty in swallowing.   Lots of people have heartburn or acid reflux and only a tiny minority will have oesophageal cancer, but it is important to consult a doctor if these problems persist as a more serious digestion problem might be the cause.   If you take indigestion tablets and the problem does not improve after a month, you should see your doctor again to discuss whether more investigation is needed.   Diagnosing oesophageal cancer early is crucial to the chances of successful treatment.

Hospitals can check for gullet cancer by using a miniature camera in a procedure called endoscopy that is invariably completely painless. But endoscopy is more complicated than, say, a screening test for breast cancer. Doctors hope that an easier test will become available in GP surgeries in the next few years.      

Treatment can involve removing the affected part by surgery.   This is a big operation, but many people do very well afterwards and enjoy a good quality of life.

  • About 1% of the population suffer from  Barrett’s Oesophagus, which is not cancer.   It is caused when stomach acid changes the cells in the oesophagus and there is a 1% risk of going on to develop oesophageal cancer. 
  • Some medical treatments might have a side effect of slightly increasing the risk of oesophageal cancer for some people.   Some medicines for heart attacks, for instance, might relax the sphincter valve that normally prevents acid rising from the stomach into the oesophagus.   And some drugs that combat helicobacter pylori , bacteria that lead to stomach ulcers, might also have a side-effect of creating a rise in stomach acid. 

 So doctors advise people to be aware of the problem, to  give up smoking, not to drink excess alcohol, to eat a good diet including plenty of fruit and vegetables and not to ignore heartburn or swallowing problems.

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Patient Stories:

39-year-old Maggie Haynes from Colchester was slim, fit, a vegetarian and a non-smoker in September 2006 when she started to have trouble with pain in her chest when she swallowed bread or other 'doughy' type foods.   Initially she thought that the pain was due to stress, but her husband persuaded her to see her GP, who sent her to hospital for an endoscopy which found a cancerous tumour which would affect her liver a few months afterwards if not treated.   Chemotherapy was followed by a successful operation with keyhole surgery that removed her oesophagus and part of her stomach.   After 9 months she was able to return to work.   Over two years since the operation, Maggie has given up her job, but enjoys life and counts her blessings, especially that her cancer was diagnosed early enough to be treated.

Andrew Price, from Clacton:

 

In the summer of 2007 I noticed that at times when I swallowed food it seemed to get stuck somewhere around my diaphragm. This could even include when I drank a glass of water, as well as any solid food. It gave me the sort of sensation of having a piece of bread stuck in the gullet. However I did not worry too much about it. It was a bit uncomfortable, but I put it down to the indigestion which I had suffered from for many years. Prior to being put on a drug called Omeprazole I had also suffered with quite bad acid reflux, often waking at night with a very painful and unpleasant burning sensation in my throat.   It was only in late November 2007 that I went to my GP for a check up as I am a type 2 diabetic and mentioned to her that I had this ‘blocky’ sensation when swallowing food. At the time I had just had my 49th birthday. She referred me for an endoscopy which I had on 10th December 2007.

 

 

 Immediately following this procedure, for which I had been mildly sedated, the doctor along with Upper GI Clinical Nurse Specialist Yvonne Trillo at Colchester General, came to see me to tell me that they had found cancer in my oesophagus. This was a total shock to me as I had never even heard of this type of Cancer before. I was told that it was treatable, probably by having surgery, which would be major in nature.

Things started to move very quickly, with a CT scan booked a few days later and soon after Christmas I started a course of Chemotherapy (Cisplatin and Fluorouracil or 5FU), which I had at the Mary Barron Suite in Colchester, and then weekly at the Jubilee Ward in Clacton Hospital. In all cases the staff were fantastic, putting me at ease and treating me in the very best way possible. My Oncologist – Dr. Skaria from Colchester General was excellent, and gave me a very clear picture as to what was happening, putting me totally at ease with everything. There was also brilliant support for my wife, who attended with me at all the appointments and was helped and supported throughout the whole episode.

I was also referred to The Royal London Hospital in Whitechapel, where I came under the care of Miss Frances Hughes and her team. It was agreed that I should have the surgery to take away all of the affected part of my Oesophagus.

The Chemotherapy lasted for 6 weeks. It was not pleasant but it was not quite as bad as expected, and I remained reasonably well throughout this time.

I was the admitted to The Royal London on 15th April 2008, and had the operation on 16th April. Everything had been explained to me and I was totally relaxed throughout the build up to the operation. As a Christian my faith helped me greatly. My local Church was a great support to us all over this period of time in both practical and emotional ways.

I came out of hospital after 10 days and then spent a period of time recuperating at home. I returned to work on a part time basis at the beginning of September 2008 (I am responsible for Children with Special Educational Needs (SENCO) at Bishops Park College in Clacton), and then started back full time after the November half term.

My progress continues to be quite good, although at times I do find it quite hard, I still suffer some pain and need to be careful not to overdo it. I cannot each as much as I used to (not a bad thing – I lost about 3 ½ stone over this period!!!!!!), and I fill up very quickly when eating. It is more a case now of ‘little and often’. Also I do not absorb as much of my food intake now, so at times energy levels drop.

However I cannot complain. The story has been one of excellent medical care (one of the sadnesses I have found is that so often our health service is slated, yet I experienced nothing but excellent care throughout this whole episode. I wish that side of the health service was reported much more, and we all recognised what an excellent service we have in this country, that is totally free at the point of delivery).

Finally I must pay tribute to my wife and family who have stood by throughout all of this. Melanie has been a tower of strength, patiently supporting and helping me, often in very difficult and sometimes very anxious moments.

So there is a lot to thank everyone for. I attribute the good recovery I have made to each one of them, and to my faith in God, who supported and sustained us all during this time.

 

10 years ago, Brian Pearce from Hertfordshire was lying on a  beach in South Africa on holiday when he realised that he became nauseous when lying on his stomach.   Thinking it was the result of too much rich food and wine, he took kolanticon from his chemist, but when he returned for a third bottle, the chemist told him very sternly to go to his doctor as he either had an ulcer or some form of cancer.   His GP referred him for an endoscopy and a tumour was found.   Brian had his oesophagus and part of his stomach removed at Harefield hospital by surgeon Edward Townsend. 

Brian said "Since I had my cancer treated 10 years ago I have  had an angioplasty and two hips replaced, but far more importantly I have seen and got to know seven grand children, and have had the most wonderful years with my wife and our children.  I am walking about five miles a day with our spaniel when not playing golf, playing bridge, or off on some venture or other.  In short life is pretty damn good.  

Oh and the moral?  Well of course it is to catch it early and move fast but I often wonder what would have happened if I had purchased my “jollop” from off the shelf in a super market and not from a pharmacist?   I suspect that I would not be playing golf later today or any other day; because ten tears ago oesophageal cancer seemed not to be widely recognised.

So please don’t rely on luck and if you have doubts get yourself to your GP p.d q !!!"

Dot Russell, from Folkestone:

For many years I suffered severe indigestion, heart burn and visited my then GP many times, who constantly prescribed gaviscon.

One evening in 2002 I went with my husband Bill for a meal in Dover and at the beginning of the meal I became violently ill, vomiting bile.

My husband rushed me to the Royal Victoria Hospital in Folkestone to the emergency doctor, who was very concerned that my GP had not sent me for an “endoscopy examination”.   The endoscopy showed  that I had  "Barrett’s Oesophagus" (that means that the cells in my oesophagus had changed and they might turn into cancer) and because of some “maverick Cells” it was later confirmed that I did have cancer itself. 

I had an operation to remove my oesophagus that was successful, but it was a very difficult time.  I cannot speak too highly of the National Health Service. It has given me a remarkable service and as for Simon Gibbs my surgeon specialist now sadly residing in America and Sue McCafferty from Macmillan Cancer Care, I cannot find words to express my gratitude to them for giving me my life.

The support from my family particularly my daughter and husband enabled me to find the strength to survive.  The flowers, cards and good wishes from my numerous friends, gave me the strength and courage to fight my battle.

To sum up, if any person you know suffers constant, acute indigestion, heartburn or similar.   You must visit your GP.  An endoscopy is the best way of finding out the underlying cause, and I wish I had had one earlier. 

 

Rosana Hughes from Greenford:

My husband had gullet cancer 17 years ago, is still physically well today, and is an uplifting example  of a positive outcome from early detection of cancer of the oesophagus.
 
It all started in 1992 when he used to hiccup after every meal. At first I told him to slow down, even 'told him off' for eating too fast.  However, after a few days with the same symptoms, and, by the way, this was the only symptom of something abnormal, at my insistence he went to the doctor. On the same day he was sent to the hospital for an endoscopy where the doctor discovered a quite large 'obstruction' in the oesophagus. He was then operated the following week at Harefield Hospital by Mr Townsend. It was a long operation, the cut was sideways, he was told by the consultant that part of the oesophagus and part of the stomach was removed. Bob never had chemotherapy as at that time it was thought not necessary. From then on and quite slowly he regained his strength. He suffers mostly from refluxes but as a whole he eats well and he has recently being checked because he was complained of stomach ache. It was discovered that he had stomach bleeding caused by taking aspros daily. There were no signs of anything else, no tumour and the doctor congratulated him on the success of his 1992 operation!
 

50-year-old Larry Rees from Finchley  was diagnosed 4 weeks after his 50th birthday after going to the doctor complaining of food "catching" as he was swallowing.    He was diagnosed as having an unusual/aggressive signet ring cell adenocarcinoma that was thought to have spread into other parts of his body, but, after an operation to remove his oesophagus he is now fit, well and back at work.  

 Peter Jones from Loughton:   My case is somewhat unusual in that I suffered from achalasia, a swallowing problem that sometimes turns into cancer.   I was being monitored for this reason, and Mr Robert Mason a top surgeon at St Thomas's hospital, recommended that I have my oesophagus removed because of the risk.   When the path lab looked at my oesophagus they discovered that I did indeed have cancer, so it was caught very early, I did not need any chemotherapy, and I have been fairly well ever since.