Oesophageal Patients Association
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Five years on since diagnosis

On the 13th February 2013 I can, without too much risk of disagreement, say that I had a bad day. I had an appointment with Dr Ryan Ponnudurai at the Prince Court Medical Centre in Kuala Lumpur. He told me that I had oesophageal cancer. That was the bad news. The good news was that it was operable (diagnosed early enough unlike 65% of patients). Today, I reflect on the fact that more than 85% of those diagnosed on the 13th February 2013 are no longer with us. I have been lucky. Even those who survive rarely experience the almost full recovery that I have had. Left with an unpredictable digestive system I just get on with things and pretend I'm normal. Thanks to everyone who has helped, supported, prayed, written and just been there.

I have already posted this on Facebook and Linked In. I hope that it raises awareness

H

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Well done Haward and congratulations on 5years.

Your comments are always positive and helpful and we all appreciate the work you do for the OPA.

Phil

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Well done Haward, congratulations! 5 years is a great achievement! I wish you many more years of good health. You are an inspiration to others.

Debs

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Like you, I'm one of those lucky ones that was diagnosed early - also like you I'm lucky enough to have made a really good recovery, just the odd digestive flare up and some discomfort in my throat if I bend over too soon after a meal. It will be six years next month since - (at the age of 72) I had my op and I'm so grateful to be here - we are indeed, very lucky.

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Well done Haward, and here's to the next 5 years!!

You've done incredibly well!!

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Hi Howard, Snap. January 15th 2018 was my fifth anniversary, and doing well. 2013 was a tough year, especially as my other half was diagnosed with bowel cancer the year before. Now 75 and 77 we are enjoying life.

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Haward

Well done to you Sir. Also well done for posting on Facebook (or any Social Media) get that message out there. Early diagnosis is the key in so many cases but of course we always think of those where it did not give the outcome they would have wanted.

Four years now for me. I shall raise a glass (probably empty but still a glass) to you at lunchtime Sir. Have a great day.

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I should have mentioned that I have 4500+ Views of this on Linked In. So a good result. H

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Hi Bruce. I am in London for a celebration of my uncle's 90th. I'll have that glass! Full. H

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You're so encouraging haward, I was diagnosed with oseophageal cancer May 2015, had surgery after chemo, then 6 months after surgery went back to work to carry on doing the same job I've done for 21 years!! I'm not the same though, as you say you 'pretend to be normal.' I celebrated my 60th birthday last Wednesday, I partied as hard as I could - brilliant.

I'm a couple of years away from my five years, but oh boy I'll get there.

Thank-you haward, you've put even more spring in my step today, keep up the good work.

xx

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Hi Howard,

I know exactly how you feel. February 14th 2012 was the day I was discharged from Gloucester hospital after my op. Now 6 years later at times I reflect at how lucky I am. I had NO symptoms I only had heartburn/indigestion for years. I suffered from Barratt`s for years, yearly/2 yearly check ups with endoscopies and in Dec 2011 was diagnosed with cancer. Now I look back and think where has the time gone.

I attend 3 monthly meeting with others who had the same op in the Worcestershire area, we have those who just had the op right through to those who are 12/13 years post op, so we all class ourselves as the lucky ones. I was in hospital 2 weeks, now due to improvements in care it has been brought down to 8 DAYS in some cases.

As for me, I take each day as it comes, yes I have the odd OFF day, usually if I each something I know will disagree (fish and chips) or if I tend to over eat. But then again if we listen to the so called experts, no matter what we eat we will get cancer.

Early detection is the key to finding the cancer, hopefully one day a cure will be found. I like all others in this group owe a great deal to the staff, relatives an friends who support us through this.

Best wishes to everybody,

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Hi haward did you start out with Barrett’s esophagus? I was diagnosed in 2000 after going through a bad spell of tummie issues that had me seeing the doctor, ER, after hours doctor on call before seeing the GI doctors who did endoscopy which referealed 3 gastric ulcers with H-pylori, bile in my stomach and gastric acid in my esophagus. I was treated for the ulcers which cleared up but that bad burning remained. I could only eat bland foods and only little of that. I lost 25-30lbs all my pregnancy weight. It took 2yrs of testing and diagnosed with gastroparesis and moving out of state seeing 2 GI doctors where the second one came at it with a fresh pair of eyes 👀 to see the stomach tissue in my lower esophagus excreting acid. He put me on protonix which was a maricle drug for me. I could eat again which was nice but all the weight came back and then some. 🤷🏼‍♀️ I see the GI doctor once a year with the every 3yr plan of endoscopy and colonoscopy. I have ulcerative colitis too so that is the reason for the colonoscopy. Haward I’m glad you are still hear to to tell us your story. What lead up to your cancer diagnosis?

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I began to lose weight. I thought this was a good thing. Then I began to have real difficulty eating solid food. Then I went to see a doctor.

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In the US, where I live, the standard of care does not include endoscopy based "merely" on long-standing and regular reflux or use of PPI's. I had used omeprazole daily for over 15 years before diagnosis and reported same to at least 10 doctors, none of whom recommended endoscopy. Only when I reported swallowing difficulty did they get into gear and I am thankful to say that after chemo followed by chemoradiation and an Ivor Lewis, I have been cancer-free since 2015.

I am serious about this suggestion--if you have been taking a PPI for a number of years, lie if you have to about difficulty swallowing in order to get an endoscopy. If you have Barrett's, you will be scheduled for regular endoscopies and and if not, you will at least know you do not have EGJ adenocarcinoma. "Early" endoscopies can make the crucial difference in the staging and curability of this disease.

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I guess that was what got the doctors doing endoscopies on me esophageal spasms. I just know I lost count of endoscopyies and colonoscopies over 18yrs ago. At one point I was on their yearly program. worthbanner I think family history for cancer also leads to an earlier endoscopy or colonoscopy being done. Between 98 -2000 I had numerous endoscopies and other tests trying to get to the bottom of the problem which gastroparesis was added to the list of diagnosis. This was done out in UT. Either way when you are sick cant eat and having significant weight loss you need to keep on the doctors until you find answers.

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@v@ keep looking ahead(((!)))

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Well done Haward. Nice to hear good positive news.

Best wishes

Debbie

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Haward - I liked your post - Congratulations on 5 years - everything should be smoother sailing going forward - at least that is what I was told - there's something about that 5 year mark. Happy for you that they found it and could operate so quickly - so you dodged a bullet and did not have to have any treatments? (i.e. radiation, chemo)?

You did not mention which kind of surgery you had? Open or MIE?

I can only assume that the mass was awful small if the doctor felt confident that treatment was not necessary?

I am sorry about all the questions - I am new on this HealthUnlocked - the first very different thing I noticed was that everyone seems to call it oesophgeal? -- because in the United States we call it esophageal without the O preceding it.

Thank you for listening.

Keep the Faith!

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Hi Lights. I underwent to five chemo cycles and twenty three radiotherapy sessions in Kuala Lumpur. I returned home in May 2013 for the operation which was carried out by Bill Allum and his team at the Royal Marsden. I woke up five days later, on my 58[h birthday, baffled, drugged to the eyeballs but with one gone tumour! H

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Congratulations indeed. I shall reach five years in 2019 and every day of the New Normal takes me closer to that day. I give my sincere thanks to my surgical team for every one of them.

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It is a long old wait. My oncologist says measure the period from diagnosis but my surgeon says measure it from the operation. I shall celebrate twice (so long as I get to May!)

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Great for you Hayward. You are very lucky and I am happy for you. It really is an achievement.

I was diagnosed T3 in Jan 2016 with SCC form but sadly 1 month after being given the all clear 1 year after oesophagectomy in September 2016 a large metastasis was found in my hip. One hip replacement and another bout of radiation and I will soon see as surgery does not include margins - I now have a 3 percent survival chance. I am 'only' 54 and I have a 12 year old who I don't want to go through the trauma of losing a parent but since I have the worst luck and endless complications I have very little doubt I will be another statistic. I no longer try and hope. Trying to get over latest surgery complications fast so I can enjoy the bit of time I have left pain free.

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I never really know what to say. I hope for the best. 3% is low but it's 3%. I hope you're one of the lucky ones. H

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Congratulations Haward. All the best to you.

AM x

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Well done Haward! I'm just past six years post op. Like you early detection was the key - I had to cancel two endoscopy and cancer was detected upon the third. I had Barrett's so was having regular endoscopys. I was 47 and my surgeon said he saw no reason why I wouldn't live another 40years! I'm happily enjoying each extra day and living more or less the same life as before my oesophagectomy - bar a few hiccupps and lifestyle changes.

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