New poll on age at diagnosis

I thought it would be helpful if I explained the background as to why we have set the latest poll. It is to do with earlier diagnosis and how this affects the chances of successful treatment.

The Department of Health are planning an awareness campaign to raise awareness about oesophagogastric cancer with a view to improving earlier diagnosis.

They say:

"We continue to believe it is important to trial an earlier diagnosis campaign for OG cancer, for the following reasons:

* Cancer survival outcomes for people diagnosed with OG cancer are poorer in England than other comparable countries in Europe

* The poorer one year survival rates is very largely indicative of late diagnosis - if other countries can diagnose OG cancer earlier, then we need to do so too

* 30% of OG cancer patients reported they had visited their GP four or more times and 15% reported they did not see their GP before going to hospital. These patients are very likely to have presented as emergencies.

* There is wide variation in gastroscopy rates by PCT across the country.

Following further consideration and discussion, we have decided that the campaign messaging will focus on people:

- who have had difficulty in swallowing, or

- over 55 who have had indigestion which is not relieved by over the counter medication, for more than 3 weeks. "

We completely agree with what they say in most respects but we are very worried that the 55 year age limit might be wrong. We know that there have been cancer cases for much younger people but do not know how many.

We also think that setting this age limit might result in more younger people not being sent for an endoscopy when this would make a difference. The Department of Health are naturally worried about the endoscopy resources being swamped with 'the worried well'.

So setting the poll may help us to gather a better picture and we would be most grateful for your help and comments.

Thanks

Alan

26 Replies

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  • Hi

    I was diagnosed at 57 but chances are I'd had Barretts without knowing it well before I was 55.

    John

  • Hi Alan,

    I was 39 years old when I was diagnosed! I didn't tick any of the 'at risk boxes' so it was a bolt out of the blue for me and the medical team involved in my oesophagectomy. Last week I reached my 5 year post op milestone.

    Maggie

  • Hi Alan I was 58 when I was diagnosed. I was lucky that I had a very astute doctor

    Edwina

  • I was diagnosed with Barretts at age 53 and with OC at age 55, my first endoscopy check up following my Barretts diagnosis. Operated on immediately , not requiring radio or chemo therapy. How lucky is that?

    That was 14.5 years ago. Only concerns are that the surgery only repaired the damage but not the original reflux disease which is compounded by the loss of stomach sphincter valve. Comes a point when this can cause subsequent Barretts and/or OC? Anyone else in this situation. Perhaps we should have continuous checks?

  • I was diagnosed at 51 and was told that I was relatively young to get it. However my surgeon did tell me that he had performed the operation on people in their twenties. Pain on swallowing made me go to the GP and it took a while before I had an endoscopy (following a few GP visits and a barium swallow). On diagnosis it was fairly advanced.

  • I was 46, 47 by the time I was diagnosed, no reflux, just pain on the junction of the o/stomach.

    Unfortunatly the g.p practice I was with only 2 doctors, failed to see any signs or symptoms. (Only a father and son)

    After many visits and tablets I got to have a chest x ray and blood test done.

    Neither of these showed up anything when the cancer was clearly there growing.

    The g.p eventually sent a letter to the hospital for a stomach specialist, after 4 months still not hearing anything and desperate, choking by now, I paid private.

    Within a week I was under the cancer specialist.

    Sorry to go on, but this does hit a raw nerve with me, a) not getting diagnosed early enough b) I had to fight and suffer so long c) had I been diagnosed sooner I would not have lost all my stomach and live a better quality of life.

    But that little number only materialises when I think back on it! I am here and concentrating on staying! ha ha

    (I could tell you more, got worse! ha but wont go on!) ha ha

  • I had a diagnosis of persistant acid reflux back in 1997 after endoscopy, but was just told to go away & keep taking over the counter medication then. I suffered heartburn intermittently for years. Last year I began having difficulty swallowing, was referred for another endoscopy in May & was very soon diagnosed at 44 years old. I was one of the younger ones on the ward, but there were a few of us in our 40's. My cancer is now stage IV & I do wonder what might have been if that first diagnosis had come with a bit more useful advice.

  • Hi there Alan,

    I was diagnosed in December 2010 with an 12cm Osophageal Tumor at age 59. However I had symptoms of acid reflux for something like 10 to 15 years prior to that. My GP had prescribed some anti acid tablets but I also had some symptoms of bronchiecstasis ( an enlargement of one of my airways near to the site of the Tumor) from about 55 onwards, which may not be related but I had a series of athsma puffers to reduce the symptoms. I believe that this bronchiecstasis was related to the reflux as my lungs had been in near perfect condition for many years and I was a regular sports scuba diver in which lung condition is of paramount importance. Following a series of sickness problems that caused me to be violently sick a few times in a short period of time from 2005 onwards I noticed that I had more and more heartburn especially when having hot drinks or soups.

    To sum up, I think that the stomach problems led to acid damage to my airways and started damaging my Osophagus which could have been detected at least 5 years ago with a simple endoscopy. The bronchiecstasis was seen with a CT scan in 2008 but no checks were done to view my Osophagus. I was told that a proton pump inhibitor may help but I wasn't given any advice on the consequences of the acid reflux.

    I know hindsight is a wonderful thing but if it helps somebody else to get any early diagnosis then i wish others could get more info ealier.

    Sorry to waffle on but I hope there may be some useful stuff in my case.

  • Thank you Colin and indeed the others who have put a comment on this poll. We have sent some strong comments to the Department of Health on this one. We believed that there were quite a lot of problems with being sent for the right examination and it has confirmed what we thought.

  • Cheers Alan,

    can we get some feedback from any reports sent to the D of H? It would be great if we could see that soomething is being done. I did hear on radio 4 the other day that our form of cancer is among the top 7th of all our type.

  • I was 27 when I was diagnosed with a stage three tumour but I'm hoping that I'm very very rare so I wouldn't want to skew any statistics!

    I will say though I was very lucky, I'd gone to the doctors with something completely different and when asked if there was anything else I mentioned that I'd had trouble swallowing for the last three weeks or so. Luckily my GP said that was no way to live my life and sent me for an endoscopy where I shocked everyone in there when they found the 8cm tumour!

    I'm now nearly 2 years since that diagnosis having gone through pre and post op chemo and a shark bite.

  • I was talking to a lady aged 23 years a few weeks ago who was diagnosed with a cancerous tumour, so I am glad that you are contributing to the statistics and flying the flag for younger patients! I know a couple of other ladies under 40 who have also been diagnosed, and my guess is that whilst the statistical bulk of people will be men aged at least 50+, there is something going on whereby younger people being affected is not as rare as once it was.

    There are NICE guidelines on when people with dyspepsia and gastro-oesophageal reflux disease can be referred by GPs for an endoscopy, and these are now in the course of being revised so that the previous 55 year age limit without alarm symptoms like difficulty in swallowing will no longer apply.

  • Wow 23 that's terrible! If she's still going through treatment and wants someone similar to talk to then by all means send her my details!

  • Hi alan

    my husband is 50yrs and the end of july 2013 started getting hiccups after eating sometimes by the end of august this was happening after every meal and in mid October he started to be sick sometimes after eating. He went to GP and was refered within 2 weeks for endoscopy which diagnosed cancer oesophagus T3 N1. He never suffered any acid reflux and still does not. I looked up on search hiccups when after eating but it never mentioned cancer . Only found this after diagnosis and on cancer website.

  • I am sorry to hear about your husband's diagnosis. A lot of these symptoms are very common, and are capable of being interpreted as 'ordinary' digestion problems, but sometimes there is a more sinister underlying cause. It is the persistence of the symptoms that can be significant. You are quite right that some people are not aware of acid reflux beforehand; and some people have 'silent reflux'. Reflux is not so relevant for squamous cell carcinoma as for adenocarcinoma (about 70% of cases in the UK). I do hope that your husband's treatment is successful.

  • Hi

    I was 71 when I was diagnosed. I have never smoked and drink moderately but have suffered from indigestion for years the first indication of a problem was the inability to swallow I was fast tracked to a consultant and am now 2 1/2 years post op

  • I was diagnosed with acid reflux after a barium meal test some 5 years before my OC diagnosis. I was prescribed Omeprazole but only for a months course. I continued to have severe heart burn and reflux until I found it difficult to swallow meat and bread. I also had symptoms resembling Angina on occasions. My doctor referred me for an endoscopy within the two weeks rule. Almost 3 years post op and coping well however I do think if I had known more about reflux I wouldn't have let it get so bad. I now tell friends who suffer with heartburn to go to their doctors instead of downing antacids by the bucket load!

  • You are quite right! It is exactly the message that we put over in Action Against Heartburn

    actionagainstheartburn.org.uk

    There are many good doctors who do indeed advocate a short period on a PPI like omeprazole, and then a review to see whether the underlying problem has been resolved; and if not to pursue an investigation (invariably an endoscopy) to establish a definitive diagnosis.

  • I had burning in the throat after eating a pickled onion and was told it was just the vinegar, I was 59 then. When it happened again I was sent to a specialist to check for allergies, he just asked questions and said it was nothing to worry about. I was 60

    Over a 2 year period it started to become more difficult to swallow, resulting in a rush to hospital as I nearly chocked, the advice was to see my Dr the next day, which I did. Then I was sent for the 'camera' job and it all kicked off from there. I had my chemo/op 3 years ago last Dec. I know with the right help this could have been diagnosed at least 3 years earlier than it was. I am very lucky to be here, it was very advanced

  • I was diagnosed over 20 years ago at the age of 45 I ended up changing doctors surgerys before I got my diagnoses.

  • I was diagnosed T2/3 ,6cm tumour when I was 62 .

    Many years of acid reflux ,many years of OTC medication .

    Remember accompanying mother to a hospital visit and the doctor seeing her kept asking me if I was ok - I had acid reflux and must have been showing pain . But she didn't suggest I see anyone about it .

    Thought swallowing difficulties were due to tension/nerves .Several GP visits ,including one where I was complaining of waking in night choking .

    Saw different GP ( young ) after that and referred for endoscopy .

  • My husband was diagnosed with oesophageal cancer at age 47. He was being treated for a hiatus hernia which he had been diagnosed with two years previously. His symptoms got worse particularly over the second year and he was diagnosed in September 2013.

  • I was diagnosed in January of this year, late stage 3 at age 51. I've had a six week course of concurrent radiation and chemotherapy which was very successful and after a two-month recovery period, had an esophagectomy on May 6th. That also went well although recovery is slow! I've lost twenty pounds since surgery as it has been difficult to keep food down, but getting better every day. So far everything looks really good. Have my first post-op CT scan in two weeks.

  • Recovery is slow going but it is the direction, not the speed that counts. Glad things are OK so far, and hope that good progress continues.

  • Hi, I was 59 when diagnosed, with no previous issues, went to GP with difficulty swallowing. GP responded correctly with an urgent diagnosis however my local hospital refused to acknowledge the urgency and thus it was 13 weeks til endoscopy after repeat GP visits and several chase phone calls to health board, and diagnosis of T3, N0, M0. Fortunate to have chemo and surgery but less fortunate to find lymph node involvement from surgical histology and thus post-op chemo. Count myself very fortunate though. Have never had acid reflux etc, not before or after surgery. But, did take Alendronic acid for osteoporosis and do suspect this might have been the cause.

  • I was 60 at time of diagnosis (May last year) but had never had heartburn issues - no symptoms until the swallowing problems began. I'm very lucky in that one of my closest friends (of 30 years) is also my GP, and I was with him the first time I noticed it. He advised me to check back in two weeks if I still had the problem. Then followed the usual path - T3 N2 M0, chemo pre-op, Ivor Lewis operation October, more chemo post-op. (I'm 4 weeks away from the last tablet...)

    I support he NHS campaign, but I agree it can be misleading, though it must be hard to condense the many and varied scenarios that might lead to early diagnosis. We tend to believe that doctors are all-knowing, placing a vast amount of faith in their diagnostic skills that they themselves would deny having - I'm assured by people "in the trade" that it's all too easy to miss, since acid reflux and heartburn are actually more likely NOT to be a sign of cancer than to be a red warning light.

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