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Oesophageal Patients Association
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Improving survival rates

Hi all,

I had Ivor Lewis in June due to adenocarcinoma at lower junction. I went to go in September 2017 after problems swallowing certain food. This progressively became worse to the point I could only manage clear soup that was passed through blender and sieved .

After several visits to go and hospital to see consultant and endoscopy, barium swallow and cabinetry I was told I had achalasia in February. I was then referred by consultant to see a different consultant who decided he wanted to look inside himself rather than refer to previous endoscopy and so in April he did, and I was admitted as emergency case due to collapsing on endoscopy unit due to not being able to eat for 5 months. 2 days later I was told I had cancer. This was the first time it was even mentioned as a possibility.

In my case and I am sure mine is not normal it was assumed I had a treatable condition until biopsy revealed cancer, I had already had numerous biopsies and was diagnosed in 2017 with barrets and sliding hiatus hernia. My point is the obvious way to improve survival rates is start with early assumption that cancer could be evident and go straight for scan. This could rule cancer out or prove it is there and this in my case would have saved 8 months of tests and allowed curative treatment to start so much earlier and giving the patient the best possible chance of a positive outcome. I had 8 month delay in diagnosis despite my wife pleading with consultant and A+ E department to help me , even after diagnosis the consultants kept me on gastro ward for 7 weeks before a decision was made to give me Ivor Lewis op.

Bunny

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Hi Bunny69

You have hit the nail on the head, they diagnosed me with gastritis , and 3 months later got a phone call saying they checked the biopsy again and that i had cancer . perhaps we should start a petition ,all the best

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Hi Razor,

I am writing to the Nhs and Chief medical officer to put it to them as a quick way to improve rates of survival. I worked out it cost the nhs approximately £20,000 to diagnose me where as a pet scan would have shown what endoscopy didn't at a fraction of the cost and so much quicker which is what we all benefit from.

Best of Luck with your treatment.

Bunny

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I totally agree with you . My husband was very lucky with his diagnosis as , like you , food & drink became very difficult. Our local pharmacist got us an out of hours doctor who got hubby straight into hospital. He was there for 8 days & a tumour was found at the base of his oesophagus. It was assumed it was cancer & all tests were done in situ, thanks to vigilant pharmacist & doctors.

You had an awful time, good luck to you.

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Hi Gardeningqueen,

Glad to hear someone got you the help you needed and hoping your Husband is doing well. It is obvious to me that the person you see first has a big part to play in a successful outcome, there seems to be a set of tests that are carried out prior to diagnosis. Unfortunately depending on where you live may have an effect too, with regards to seeing someone with experience of what the symptoms could be caused by. Best Wishes for continued good health.

Bunny

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Hi bunny69 I totally agree with everything you’ve said. My husband had Barrett’s and sliding hiasus hernia for at least couple of years until he got to the point of food and fluid not going down properly. After endoscopy he was told he had OC. He had chemo, Ivor Lewis, seemingly he recovered but IT returned and he lost his battle after 18 months. My point is, had he had investigations while he suffered with Barrett’s and hernia he could have been treated earlier as these conditions are sometimes a trigger for onset of C, not always I know but just MAYBE give someone a better outcome. Wishing you all the best Bunny x

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Hi Jinx58,

So sorry to hear about your husband and what you have gone through. It highlights the point that the key to treating any cancer successfully is early diagnosis. What doesn't help with oesophageal is the tendency to prescribe ppi for reflux then forget about what the cause of the problem is. In my case my consultant told me he had a hiatus hernia and in his words it didn't give him any trouble, and barrets has no symptoms. Which should make them look further into why or what was causing the trouble. Best Wishes.

Bunny

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Sorry to hear these.

I must have been lucky as I had a problem swallowing for a few weeks,gradually getting worse till I could not swallow at all...went to Drs next day and was booked for a endoscopy the next week, they took biospy at same time and chap who did the endoscopy told me it didn't look good and it looked like cancer but biopsy would be sent to be checked to confirm.

A few days later went to see Dr at hospital and it was confirmed i had a tumour and was sent for CT scan to see if it had spread. I was then sent for a catscan and then seen oncologist and was told about what the chemotherapy would entail....all this happened within acouple of weeks.

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Hi Sammy1968,

I won't go into what happened fully, I went to gp during first week of having difficulty and was referred for endoscopy with biopsies and photographs and some weeks later a second endoscopy with biopsies that showed sliding hiatus hernia and barrets . It was only following third endoscopy in April that cancer was mentioned and confirmed by biopsy . The tumour was the size of a clenched fist at the lower junction and the surgeon who removed it said in his opinion it had been there at least 8 months which falls right into the time of the first endoscopies. The surgery was carried out at a Liverpool hospital and not the hospital that I was admitted to as an emergency admission. I saw several consultants who said they were baffled as to how it could be cancer but not as shocked as me and my wife and daughter who up to this point were led to believe our was suffering from achalasia .

Best Wishes.

Bunny

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You were lucky, all my tests were st least 2 weeks apsrt even thouhh the dr who did 1st rmdoscopy told me there was an ulcerated tumor and it wasnt good. I was being yteated fpr reflux. Sti

L i finally got all the treatment including ivor lrwis i sept 17. I was clear after surgery and am stoll imprlving in health

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Yes by reading the posts on here I was very lucky. I have read that this type of cancer doesn't have a great survival rate as by the symptoms have developed the cancer has already spread.

Good tjat your getting better...pleased to hear it 👍👍

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My first reply got discarded while trying to type. Argh.

It's not common to have early, accurate and precise diagnosis in OC cases for a variety of factors.

It was unfortunate that my GERD and HH turned into OC, however lucky to have got this discovered early stage and treated with curative surgery. Survived for last nine months.

In regards to your wait of ward for surgery. Perhaps MDT were holding on the surgery to make sure you were healthy weight to endure the surgery and sustain recovery immediately after the surgery. I note that you did collapse at GI unit for malnutrition.

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Hi Mauser,

You are correct in that in can be difficult to diagnose oc however one thing that should be done at earliest opportunity is based on patients symptoms if they present with symptoms that could be cancer then assume it is cancer and rule it in or out with a pet scan. And I understand the logistics of how many extra tests this would create but it should be about saving lives not whether a department would be busier coping with demand. It cost £20,000+ just to diagnose me which could and should be spent on staffing instead a scan would have cost less than £1000 and would have confirmed and staged the cancer. The delay in my case was due to the first hospital thinking I had mets in left lung and also I was being fed on main bags that damaged my liver meaning I then couldn't have now adjuvant chemoradio . I had to prove my fitness at the hospital that did op so 8months to diagnose then 2 1/2 more waiting for mdt to allow me through for op ( my lung was not mets but an infection)

Best wishes

Bunny

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Yes I do agree with your point. Having said that it's subjective way of doing things by assuming everything cancer and jumping ahead of the protocol, meaning there maybe other things which could be completely missed during the investigations if not done.

I have come to experience that it's a collateral damage of our blessed NHS.

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They talk about the cancer clock in terms of treatment starting at the moment you are seen by a medical professional, the diagnosis should be done within the timeframe prescribed by the nhs. The clock did not get started for me until emergency admission in April as nobody I saw mentioned cancer as a possibility. This is why to increase survival rates you need early diagnosis. Assume it is the worst and work back from that would surely increase the rates. I had three of the symptoms and spent months trying to get help, without my Wife and Daughter fighting to get me treatment I would not be here now. I don't intend going anywhere just yet and like yourself am learning everyday what the new normal is following op. I am five months now and don't feel any worse than I did in June and trying to do a little more each day. And gaining some of the 4 1/2stone I lost . Best wishes

Bunny

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Hi Bunny, I was lucky or maybe they just do it better in Aust. I too had Barrett's and had a routine endoscopy it showed up a bit red and they tested for cancer immediately came up positive and they booked me for Ivor Lewis in six weeks result 100 o/o cure all on Medicare the recovery is no picnic worse than the disease for me but better that being in an urn on someone's mantelpiece

Good luck

CJ Mudgee Aust

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Hi

I’m late to this post but I have to agree. I consider myself lucky firstly that my GP referred me for endoscopy after mild symptoms and secondly for the ulcer in my stomach that wasn’t healing because my cancer was not visable. Initial biopsies were fine, I was told I had gastritis, ulcer and sliding hernia. It was the third biopsies 3 months later that showed cancer and as a 46 year old fit and healthy woman it wasn’t expected and that is the problem, my oncologist told me last week that so many “younger” patients are diagnosed when it is advanced because they’re simply not looking for it, his recent youngest stage IV was just 39. My oncologist is from Asia where gastric cancer is very high and they have national screening similar to how we do mammograms and smears etc. We’ve so much to learn in this country and I fear with our current government and their destruction of the NHS it will be no better for our children.

I see that you were treated at Aintree, I also had my op performed there by Mr Shrotri on 7th Jan, despite the initial delay in diagnosis I’ve received great care and due to return soon for adjuvant chemo.

I do hope your treatment is going well.

Louise

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Hi Louise,

Glad to hear you are well. It just makes sense to rule out the disease that is hardest to treat at the earliest opportunity. My care at Aintree was fantastic and without that I would not be here now, I have mets to liver but up to now we are hearing and seeing a positive response to second line palliative chemo. But we are busy trying to find out how my treatment went so wrong to ultimately put me in this position and to try and ensure it doesn't happen to someone else.

Best wishes for your continued recovery.

Mr Shotri saw me once as Mr Khan was on leave and he noticed a problem with a blood result and put me on antibiotics but every part of care at Aintree was second to none. I live about 200 yards away from my nearest hospital but would not go back there if I can help it. All my follow ups are at Aintree.

Good luck and stay strong.

Bunny

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Wonderful to hear you are having a positive response to chemo, long may not continue! I hope they do get to the bottom of things for you, it is so upsetting to think this can happen when it’s avoidable, my mother in law was almost 2 years of tests before bowel cancer was diagnosed, thankfully she’s here 6 years later.

Mr Khan discharged me from hospital and when Mr Shrotri was on leave, they are wonderful surgeons, it’s a small world isn’t it. I too live nearer to Broadgreen but I’m more than happy with Aintree.

Good luck with your continued chemo, I will be rooting for you.

Louise

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