GOJ cancer

Hi all,

I've 38 from Derby and recently been diagnosed with GOJ cancer. It all started last year with sharp pains in my left chest. I was admitted to hospital 4 times with severe pain and sickness. They found in August 2015 after a ultra sound There was a 2cm gallstone and recommended I have surgery to remove my gallbladder.( all other tests done came back ok). Whilst waiting for my appointment for gallbladder surgery I received a letter a week before Christmas 2015. It was an appointment for a grastroendoscopic Check up and 9th January they found after camera examination I had oesophageal junction cancer. Since that day my life has turned upside down, I've spent more time at hospital in last 4 weeks than what I have in 38 years. Outcome is I have a T2 N0 M0 and due to have ivor Lewis op on March 4th. Crapping myself because the research I done is not very positive..... Is there anyone out there who is of a similar age who is going through the same issues

22 Replies

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  • Hi Leon, I'm just down the road in Burton on Trent. I had the Ivor Lewis op in March 2013 at Derby Hospital, yes it's a major operation but I found all the staff at Derby absolutely brilliant. I had the op when I was 60 (T3) I'm sure everyone on here will agree with me the recovery is a long slow process best taken a day at a time, good days bad days, but it's not long before the good days outway the bad ones. You will get all the help and support from the hospital and members of the OPA. Wishing you all the very best, keep in touch

  • I had the Ivor Lewis op' at the age of 72, I'll be 77 this year - so, age wise we're not at all similar plus I didn't, and don't have gallbladder problems either - and I'm a woman, so we're not at all similar! However, I just wanted to make the point that you shouldn't believe all that you read if doing your research on the Internet. Listen to your doctors, trust them and unless you want to frighten yourself half to death - don't google anything! I hope all goes well for you, in the meantime try not to worry - good luck.

  • Leon

    I was 57 when diagnosed, out of the blue for me. Chemo then surgery then some more chemo. I am now eighteen months post op and returning to "normal".

    You have come to he correct place for info and support. I found Google a nightmare and very depressing when trying to research prior to my surgery.

    Be positive here buddy. This is survivable.

    Bruce

  • Hi Leon. I was 45 when I had my op two years ago. There are a few people that are younger, with a positive attitude and a few adjustments, life can go on with a reasonable amount of normality. Don't be afraid to ask questions, it seems different surgical teams have different views about how much they tell their patent about life after the op. This forum can be a wealth of information too, you'll get more realistic answers on here than reading about it on a "generic" style website.

  • T2 NO MO are "good" numbers. 38 is a very good number! Generally this a disease affecting older people who therefore have other issues to contend with (comorbidity) which skew the survivability stats. And, oddly, if that annoying bus flattens you tomorrow, you'll be included in the OP death stats, because you're post diagnosis. Internet (and even official) figures vary wildly, and are mostly out of date... So those are your Reasons To Be Cheerful, 1,2,3.

    Ivor Lewis is a big op, but as long as you tell them, and you must, it's not agony for the patient. Modern pain management is superb, and three nurses will drag you out of your intensive care bed on Day 1 to get you moving. And it works. Just a few steps on the spot, building up gradually, and your strength will return. I escaped hospital aged 62 in 9 days, with only one night at the end on a general ward. I hear of a chap in Liverpool who managed 2 days quicker than that!

    All being well, the stitches will be out in no time, at home, you may temporarily be fed or partially fed from a tube/pump at night as you gradually return to eating enough by mouth, and you'll learn to cope, making mistakes along the way, and seeking help among the crew here, THE place to come for some very expert medical knowledge as well as personal experiences.

    Do ignore the stats. Your age is very much on your side and your surgeon will probably rattle his way through three or four Leons a week. He's seen the lot, had hit the snags, and knows there's instant assistance at hand if he needs it. Post-op you'll be monitored constantly - if you so much as break wind they'll know - and the back of your bed will look like a tv studio gallery packed with machines going beep and ping.

    So have faith. We developed "Tumour Humour" (TM) to get us through, including naming the little sod "Tubby The Tumour" you might need to ask someone older about that!) Whatever works is good. Sound clinical evidence shows that positive thinking generally gets a better outcome.

    It's a long road, but not usually a lonely one. Family and friends generally come up trumps and so do medical staff, including community nurses and your new friends here. Welcome, good luck, my thoughts and prayers are with you.

  • Hi Leon, I was 45 when I had my Ivor Lewis that was 23 years this August, like everyone says it is a long journey when I had my op there was not a lot of support or information like there is today. Good luck.

  • Morning Leon. I'm 60 and 3 years post op. You'll find this site very helpful. Like you I decided to "research" the disease when I was diagnosed. All that did was frighten me and get me a wagging finger from my oncologist who told me to believe him and not the internet. I attended an OPA meeting in Essex recently and that was one of the big messages from the patients there - that the internet is unhelpful and misleading and Cancer Research will, by the way, be changing their approach.

    If you need to talk to someone do call the OPA helpline - we have people well able and very willing to talk to you. We also have patient support groups and there is a great one in Derby - they'd be delighted to see you. The helpline is 121 704 9860.

    Now I must go and have that black pudding that I can eat again!

    Haward

  • Just bear in mind that David Kirby, who started the OPA in 1985, had this surgery over 30 years ago and is still alive and well, and there are a good many other people who have also had the same operation 20 plus years ago. Since then, of course, surgical and other techniques have improved quite a bit. The stage of the tumour is the crucial thing, and when the disease is caught early, like yours, the long term prospects are good.

    That does not mean that the whole process won't be a challenge, physically and morale-wise, but you can listen to the doctors and crack on with things with confience in their ability to see you through OK.

  • Like most people on this site, I was older than you when I was diagnosed (54), but I have met several younger people at patient support group meetings.

    I'm not sure whether you are looking for encouragement or brutal honesty. In terms of encouragement, as others have already said, T2N0 is curable and, given your age, provided you are in reasonably good health, your chances of long term survival are very high. However, the surgery will take a while to recover from and will have a long term effect on what you can and cannot eat and what you can and cannot do.

    I think one of the biggest impacts for people of your age is psychological and the effect on your self-confidence. Don't be afraid to ask for help and, if possible, don't rush back to work.

  • Can relate 100% to this post! The psychological aspect of things played a much bigger role than what we ever though it would with my parter.

  • Hi. I just wrote a long, but encouraging reply, but unfortunately I had a pop up from Barclays bank and it took me away and I lost all i wrote. So just keep your chin up. You will be OK.

  • Like you, I was 38 at the time of my transhiatal esophagectomy. We will all be here to help you as best we can after the op. \wc

  • Hi Leon.

    I cant really add anything to the brilliant comment's you have had on here today only to say I'm almost 9 years post opp,now aged 64. Having time/age on your side can only be a good thing, try to stay positive.

    Kind Regards

    Steve

  • Hiya, we are near Sheffield, my boyfriend (aged 34) was diagnosed this time last year with T2 N0 M0.

    He's now 7 months post Ivor Lewis and doing really well.

    We also felt the same as you, our life turned upside down, we can totally understand how you are feeling, please don't read up on all the bad stories, we are slowly getting back on track now after 2 months of chemo (a few post chemo complications) & the Ivor Lewis. He is adapting to new ways of eating/tolerating food & regaining his energy levels again, it's a long, tough road at times but it's all do able. You will get through it! Take each day at a time at the moment. Please get Intouch if you want to discuss anything at all :-)

  • Thank you all for your kind words and support. Hospital phoned and they have brought my operation date forward. I'm now having Ivor Lewis op Thursday 25th( tomorrow) providing icu bed is available . Shitting myself but feeling positive at same time will update my progress when out of hospital....... See you soon

  • Thinking of you. Small steps. Let us know how you're getting on when you can :-)

  • Hi Leon Hope the op went well I am sure you will benefit from this website hearing success stories and help with your recovery. You are so young that will help. All the best for a speedy recovery!!

  • Hello all just quick update. Had operation 25th Feb 6 hours long. On road to recovery and then on the Monday 29th there was a problem I was leaking kile fuild. Had to have another operation 6 hours long for them find two leaks in my chest and told another rib had to be removed. It's now day number 13 and still in hospital. Chest drains removed drinking and eating soft foods but due to having my lung collapsed I now have pneumonia so having an extended stay in hospital till I'm fully fit. Hopefully Friday I'll have 40 staples removed from my side and back and be discharged. Overall I'm glad the cancer has been removed but what a journey it's been. Now the fun start finding out what I can and can't eat

  • It is probably not surprising that there are a fair number of people who have had complications after this surgery, because it is such a big operation. But for lots of people it is just one of the dips on the road to full recovery. The pneumonia is not uncommon either, and tends to sound worse because of its label, but you do sound as if you are going to do OK and you have our very best wishes for a complete recovery. Take it steady!

  • Need help struggling to eat and drink cause I'm feeling fulling all the the time And when I do eat (1 wheatabix) I'm so bloated after. Can someone please give me some advice how to eat after lvor Lewis op. Sick of feeling full or bloated.

  • Hiya. How are you doing? Sorry you had all those blips after your surgery, hope things are improving gradually for you now. We started with things like; jelly, mashed potatoes, crackers, all really small portions at first, little & often. its a massive trial & error time is what we found. Hope you're ok.

  • Yea definitely trial and error. Went back to hospital other week and was admitted for 5 days due to my pyloric muscle not working and breathing problems which they put down to stomach putting pressure on my lungs.  Had a dialation procedure to help stomach empty food into bowels which has help. Only thing is I'm having eat liquid foods until doctor tells me different. It so hard miss the foods I loved pre Ivor Lewis op

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