IN 2006 I had a gastroscopy because I found food 'sticking' in my oesphagus. I was told that there were no abnormalities but that it appeared I was suffering from gastric reflux - and omeprazole was prescribed. The omeprazole worked like magic - and my eating returned to normal. Two weeks after that procedure I received a letter from the hospital telling me that my images had been reviewed and could I return for a second gastroscopy. This caused me some concern but, in fact, I was again told that there were no abnormalities. I was told, however, that I would be on acid reduction medication for life and, some time in the future, the dose might have to be increased or the medication changed, or even surgery might be necessary.
In early summer this year (2011) I again experienced the food sticking problem and so went to see my GP. He doubled the dose of omeprazole (10mg to 20mg) - but that made on difference. I returned to see him and he prescribed Lansoprazole (30mg) but also referred me for another gastroscopy. The Lansoprazole did not work - but the gastroscopy identified ulcerated areas at the lower end of my oesophagus and upper part of my stomach. Biopsies and bloods were taken and a CT scan ordered. I am now diagnosed with adenocarcinoma of the oesophageal junction. The good news is that early indications from the CT scan are that the cancer is still localised and has not spread. I am currently undergoing staging tests. I have had a PET scan and will be having a USE next Tuesday, followed by diagnostic laparoscopy. As yet I do not know if the PET scan has confirmed the initial indication of the CT scan that the cancers has not metastasised.
I have, of course, been doing a lot of research on oesophageal/stomach cancer. I have not smoked for 43 years, I am a moderate drinker, and I eat a healthy diet. It seems to me, therefore, that the main cause of my cancer is the acid reflux first diagnosed back in 2006. Bearing in mind that it is known that acid reflux can lead to adenocarcinoma - should it not be the case that patients diagnosed with this conditions should have regular monitoring - say annual gastroscopies to ensure that cancer is not starting up? As we all know - the earlier the cancer is caught, the better the prognosis. Assuming that my cancer has not spread - then it seems that I might be very lucky because, as I understand it, the symptoms of cancers such as mine are often not apparent until the disease is well advanced.
I don't know how much a gastroscopy costs the NHS - but if annual gastroscopies of patients identified with gastric reflux reduced the number of those having to undergo extensive and major surgery for oesophageal cancer, then that would be a major saving in the long term...
Kev
Written by
Retd
To view profiles and participate in discussions please or .
Some interesting questions raised. I was in the same boat. Had my first endoscopy in 1997 which diagnosed acid reflux. Here I am fourteen years later with advanced cancer, recovering from gastrectomy two months ago to be told this week that I still have cancer. I know Omeprazole was not available in 1997 but I do wonder what life would have been like had diagnosis not needed to wait until I had the symptoms of food getting stuck. I hope your cancer has indeed been caught early & that treatment is a success.
Thanks Fredsonic - I'm keeping my fingers crossed!
Dear Kev
Adenocarcinoma (OADC) is one of the two main types of oesophageal cancer and in the UK it probably amounts to 60% + of the oes. cancer cases. OADC is very often associated with a condition called Barrett's oesophagus, where the lining of the oesophagus changes to become more like stomach lining cells, which can withstand the acid, whereas oesophageal cells cannot so easily. If you have Barrett's oesophagus (BO) the statistical chances of developing OADC are 0.5% per patient year. So if you had BO at 20, you would have a 20% chance of developing OADC by the time you are 60.
So basically you are right in what you say - acid reflux / heartburn should be taken seriously. The Department of Health are planning some pilot awareness campaigns that are scheduled for Easter time in 2012, and these may go national.
In your research you may come across dismal survival statistics, but if OADC is caught early, the chances are that you will join the room full of 50 former patients whom I was with this morning who enjoy a good quality of life, sometimes many years (the record is 28+) after treatment. And most of them would have described food as getting stuck at some stage.
It is a bit of a traumatic time going through all these scans, but this technology does allow the hospital to make a much better diagnosis and plan your treatment in a far better way than they were able to a few years ago.
Many thanks for that detailed reply Alan. Bearing in mind the statistics you give, I would accept that giving all gastric reflux patients annual gastroscopies may not be possible or useful or financially acceptable. I suppose when you are hit with something like this - you are looking for someone to blame! I am keeping my fingers crossed that the staging tests will back-up the initial CT scans and show that the cancer is still localised.
My best wishes and hopes for you both. This is a "club" no one wants to join! I think this cancer is a "cinderella" one both regards initial diagnosis and possible secondaries after surgery (I posted a question regarding monitoring in October.) I do hope the PET scan confirms a positive picture for you given the circumstances. I had stopped smoking 25 years before diagnosis, light social drinker (never shorts) good diet (almost veggie) etc. My surgery has no information at all on it, not even a poster. There appears to be very little publicity or information generally (Thank Heavens for the OPA!) in this area compared to other cancers so I am not suprised that the figures are sadly increasing.
Yes, you are so right Charlie. I was certainly not aware of these issues until my diagnosis and I began my research. The fact that I was told back in 2006 that my gastric reflux may return, and my medication may need to be increased or changed, gave me a false sense of 'nothing to worry about' when the 'food sticking' problem recurred early this summer. Had I known then what I know now, I would have been immediately pushing my GP to refer me for a gastroscopy. As it is I wasted around four months trying increased dosages of omeprazole etc. before he finally did the referral. Kev
Alan, I was literally posting my thoughts when yours popped up on the screen! I am glad to read of the pilot schemes you mention and really hope these do go national very soon. Thankyou for all your info!
Hi. I think you are in the same position I was in some months ago with adenocarcinoma T1 ?? of the upper stomach and Barrets disease of the lower oesophagus. This is what happened to me and you should make your own judgement. I delayed any surgery for 6 months to see if there were any alternatives to surgery. Non for stomach cancer.
About a month ago I had a meeting with my surgeon who said that I should have the surgery and if not would have 3-5 years before I died. He did stress that during surgery he could find the cancer had spread and he would not know this until he had done the op. He gave me 2 options. A full gastrectomy with 5cm of Oesophagus as well (Roux en Y) or a partial stomach and oesophagus gastrectomy with a 10cm jejunal interposition which is a length of jejunal between the remaining oesophagus and stomach, the idea being that the stomach would be lower than a full gastrectomy with less reflux. The later has advantages in that the Vagus nerve is largely untouched and dumping should not occur.
I had the later op 3 weeks ago and am now recovering at home. I am eating but not well as I always feel full, especially with all the abdominal swelling. I do not at this stage have any reflux so am hopeful I will return to near normal except reduced meal volumes. The surgeon says I have a long way to go to prove this.
What is of most interest is that my previous biopsy of T1 ?? had developed to T1B. The B indicates that the cancer had gone deeper into the second layer of the stomach. The cancer had not spread. My surgeon obviously advised me correctly. He said i was very very lucky it had been found early and i think this is the case with you..
I had the full 'zip job' right across the midrift as if you have keyhole surgery, the risk of leaks in the joints is much higher. I had a swallow test after just 5 days with no leaks.
I hope this helps with any decisions you have to make. make no mistake, this is a major surgery and i will be unable to lift or do anything manual for at least 6 weeks after the surgery. After 3 weeks I am able to go to the supermarket and do short walks.
Thanks for that Medway. I have my USE (EUS?) on Tuesday - so should learn a bit more at my next clinic appointment about how deep my tumours have extended. My case is being discussed at the MDT meeting on Wednesday and I am hoping that I may have a clinic appointment shortly afterward. I do still have to have a diagnostic laparoscopy, however, and so they may delay the clinic appointment until after that. Kev
I should have added that some months ago when I was investigating alternatives to surgery, that somebody on this forum said that he had been diagnosed with T1 stomach cancer and when they did the op they found T4. Mine was diagnosed as T1 ?? and was in fact T1B.
You have to make the decision regarding the risks of each type of treatment. I found it a good idea to have all the questions you want to ask written down before you see your surgeon. The question of level of risk should be asked. The area of concern is where the pancreas and liver are very close and any cancer in these areas is very serious. I had a second opinion from a surgeon who said to me that if it has spread to these organs, thats it!
You should also ask what type of cancer you have. Mine was adenocarcinoma which is serious but just local luckily. There are other types which might develop into adenocarcinoma.
I know its a terrible situation to be in and the mental effects are a challenge as well, not only to you but your family. Chin up. I'm sure your in good hands and the NHS is currently in good shape and hope it does not go downhill like it did some years back.
I have adenocarcinoma of the oesophageal junction - so above and below the oesophageal sphincter.
Just got back home after having my ultrasound endoscopy in Liverpool. The doctor told me that it's T3... Quick Google suggests that that means that it's still localised (which confirms the initial CT scan) - albeit advanced. My case is being discussed by the MDT tomorrow and I am hoping to have another appointment with my consultant soon after. I am anxious now for treatment to start after all these diagnostic tests.
I'm sorry to hear that it has gone to T3. I just had adenocarcinoma of the upper stomach around a GIST I had removed 6 months ago. My oesophagus was just barrets disease. Its important now that you have to ask the risks of it having gone elseweher and pray it has not.
I went into the op asking for the jejunal interposition op with just part of the oesophagus and stomach removed with the possibility of the major Roux en Y dependent upon what they found. This may be your request but discuss with the surgeon.
Dont be afraid of the op. It is big and i would suggest they will not do the keyhole job as they are working a bit blind then. Can I say that it is very important to be fit before the op. I am very fit and was out of hospital in one week with a scar from one side to the other. get on that bike and get walking up hill!
The NICE dyspepsia guidelines, under a flowchart for management of GORD on page 15: Note 3: "Review long term patient care at least annually to discuss medication and symptoms. In some patients ... it may become appropriate to refer to a specialist for a second opinion. Review long term patient care at least annually to discuss medication and symptoms."
(Interesting to note the repeated sentence - poor editing or intentional?)
The NICE guidelines for Barrett's Oesophagus recommend surveillance endoscopy every 2 years which Kev would have benefited from.
In my own case, I was also diagnosed with GORD in 1997 and, having seen the pictures, and from what the specialist told me at the time, pointing out the red patches and saying it could lead to cancer, diagnosed Barrett's myself (though no biospsies had been taken). I was put on omeprazole immediately but, although my doctor did refer me again for another endoscopy a couple of years later, again no biopsies were taken and I wasn't put on a regular surveillance regime until, having moved area and requesting my new GP send me for another endoscopy, my Barrett's was confirmed by biopsy in 2007.
Perhaps it's time NICE guidelines were tightened up a bit?
Perhaps persistent GORD may merit surveillance every 3 or 4 years depending on severity with biopsies required wherever there's the slightest signs of metaplasia and more frequently if metaplasia is confirmed. Treatment advice for dysplasia has been reviewed in the last year to recommend ablation therapy for high grade.
That's very interesting Chris. At the very least - after my diagnosis in 2006 - I think I should have been told to come back immediately for a further gastroscopy if the symptoms returned. In the event, because I was simply told that at some stage in the future I may need a PPI doseage increase, or different medication, I did not take my recurring symptoms seriously enough and wasted some four months trying increased omeprazole, and a change to lansoprazole. The only strange thing is that between my gastric reflux diagnosis in 2006, and the symptoms recurring in early summer this year, presumably because of taking omeprazole, I had no symptoms of reflux at all - so I was not aware that the damage was continuing.
I've never given that much thought to reflux. I did have a bit of reflux for a few years before diagnosis of oesophageal/stomach cancer. I had put it down to other stuff that had happened to me in the past. That is the reason I left it so long before seeking medical advice about my swallowing problems. I had also been told that oesophageal cancer wasn't that common in Northern European people. I'm guessing it's a numbers/cost thing that will stop any proper research being done. I had a similar procedure to Medway, I also do not suffer from reflux. When I was diagnosed I didn't rush out and do any research, I trusted in my surgeons to do the right thing. I just felt (based on 50yrs experience as a NHS patient) that not enough was known for me to come to any conclusions about my (individual) diagnosis. No point in winding up the family with guessing games. I treasure every minute I'm alive and try and make the most of it, with my wife, family and friends. I went fishing with my mates the day before my surgery and was back fishing a month after surgery.
Life is good and I wish the same for you and yours plus everyone on here.
Thanks for that Mark. Everyone's different I suppose. For me I just felt I had to learn as much about my disease as possible. I just wish that I had done this research back in 2006 when I was first diagnosed with GORD. Had I done so then I would have known how GORD can develop into gastric cancer, and would have put pressure on my GP to refer me straight back for a further gastroscopy when my symptoms recurred earlier this year.
Hi Kev, in 2006 you may not have had the same answers. In 1965 I had an accident, I had to fight to keep my legs. It was hard keeping them, a lot of down time. However I would not of achieved nearly as much without them. 2006, I had to have them amputated, they had come to the end of their life. I have been told that because of research, if I had my accident now my legs would have come off during the initial clean up in A&E. In all probability I would have had a lot more of my legs removed. I have mixed feelings about research.
A somewhat late update to this thread - but as some of you may be aware from other threads, my staging tests did not produce the conclusion I was hoping for. Although there are no metasteses - there are a number of lymph nodes affected - including one high up in my neck. My MDT have concluded that I would not benefit from surgery and that palliative treatment is the only option. I began palliative chemo on the 15th December. This has not been our best Christmas...
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
