I wasn't expecting this

For the last six weeks I have felt as if food was getting stuck at the bottom of my chest below my ribs. A few seconds of discomfort and then it passed. A fortnight ago I went to my GP who arranged an endoscopy. In the meantime things improved and I felt a bit of a fraud going expecting to be told I had a bout of Gastritis or maybe an ulcer. No other symptoms, no blood, vomit not even reflux. Good appetite too

Like other posts I had my endoscopy (yesterday) and was ushered into a quiet room where my wife & I were told I had cancer. I am waiting for biopsy results and a CT scan and a call from the cancer nurse so I am in limbo at the moment and very scared.

The doctor who did the tests said I had a ulcer ( 2cm) which had hard patches and he was certain it was cancerous, reckoned I'd had it 6 months. Its at the join between my esophagus and stomach. I have looked on the NHS & American sites etc but found little to set my mind at ease. They all say by the time you get symptoms the cancer is advanced but what does that mean? Terminal? Treatable?

If anyone would share their experience It would help me a lot

thanks

John

29 Replies

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  • John

    You will still be in shock at hearing this news.

    The position of your cancer is the most common in the oesophagus.The same thing happened to me 10 years ago and like you I was on total shock. But it is treatable and please try to remain positive.The hospital will move things on quickly now and before you know it you will hopefully be having your operation. It's a tough road to recovery but you will get there like the rest of us on this site.

    Best Wishes

    Phil

  • John, it sounds as if your cancer has been caught quite early. Many people don't go to the doctor until they can't swallow at all. There is a good chance it can be treated, probably with chemo then surgery.

    I had adenocarcinoma, which is probably what you have. I had surgery 7 years ago, and now I'm well with no sign of cancer.

    It's horrible waiting for tests, then waiting for the results, We all understand how you're feeling. If you have any questions just ask.

  • Hi John, Cancer is a bit like the spanish inquisition in that most people do not expect it , I was one of the 'lucky few' who was diagnosed with barretts some 20 years ago and was then monitored every 3 months whilst I was in the forces and then 6 monthly until 2009 when I was diagnosed with cancer. I had Ivor Lewis method and am now at my weight I was when i joined up at 17 (I am now 58).

    It does sound like you have been very lucky and you may even get away without the need for Chemo etc - things will progress very quickly from the hospitals side and it should not take long before you are discussing options. I would suggest that you relax for the time being, I know it is easy to say and hard to do but- but start 'feeding yourself up' . It is a long road but as so many of us on here will testify you are not on your own. If you want to chat just drop me a line and i will give you my number.

    All the best RAy

  • Hi John I went through the same as you 4 years ago told I'd had the cancer for at least 12months or more it was in the same join too like yours and told I may only be offered palliative care . .. but after more scans. tests etc I was told it was stage 3 and began chemo then surgery and more chemo.... I am now cancer free ... stay positive and please post any questions you have as there are lots of great people on this site who have helped me over the last 4 years and we are all here for you best wishes for your results

    Margie

  • Hi Margie,

    I Have been offered palliative chemo. I didn't really get much from the hospital oncologist. He was quite blunt and I came away not really understanding my situation. I have phoned Macmilan and they were so nice. The nurse there said Palliative chemo means keeping you as well as they can for as long as they can and

    the additional scans will confirm the best type of chemo for me. She said I should start it within a month following my hospital visit on 3rd Jan She has at least given me some hope. Was this how it was for you?

    John

  • Mine had spread to my stomach too but I fought and beat it so Stay positive John don't give up when I was told palliative care I thought " no chance this is not goin; to beat me" take care john

  • Thank you all so very very much Phil, Ray, Patchworker & Margie. My wife & I are in tears, your positive and informative comments have given us so much hope.

    I will let you know how I go on.

    Many many thanks again

    John

  • Hi John...I'm sorry for your news and your story sounds very familiar but hopefully yours has been caught early and that is key in this kind of cancer especially if your biopsy comes back your cancer is andencarinoma. I'm sure things will move quickly for you, they will likely do a CT scan first and possibly a PET scan to see if the cancer has metastasized and they will stage you. I would recommend not going on google because it can be very scary. You have done the right thing by reaching out to people who have travelled down that road with the same cancer and even though everyone's journey is a different one it helps to have the support of others with the same cancer. My husband was diagnosed October 1st 2015 a day I'll never forget it changed out life 4ever, we were taken into a private room and Doctor who did the endoscopy was 99.9 % sure he had cancer his was at the base of the esopagus at the GE junction but we had to wait for the biopsy to come back to determine which cancer he had. Unfortunely results came back andencarinoma which is an aggressive cancer and PET scan showed it had spread to the abdomen so he was not a candidate for surgery. Yours sounds like it was found early so the quicker you have surgery and start treatment the better. All the best to you and feel free to ask any questions you want. Stay strong!!

  • Hi John. Are you aware of the OPA helpline on 0121 704 9860? We also run patient meetings which you can find on our website opa.org.uk Keep in touch and good luck

    Haward

  • Hi John, I had exactly the same symptoms as yourself, and was diagnosed with a cancer near the junction of my oesophagus and stomach. I went through the usual procedures, and have now been cancer free for 8 years. I was 57 when diagnosed. I went back to work three months after surgery, and I am still working and living a completely normal life. As you have already been advised, you have to remain positive throughout.

  • Thanks so much for the replies they a a great help. I will post my results when I find out.

    John

  • Hello John

    I had a very advanced Adeno (as big as a grapefruit) but that was 25 years ago which just goes to show!

    Slog through the last 3-4 years of posts on this site and you will know almost as much as your surgeon and then be in the best shape to beat it.

    Keep us in the loop and feel free to ask anything any time.

  • Hello, John,

    I went for an endoscopy in February and had a similar experience. I foolishly went away and googled it and had virtually written my will when after having, CT scan, PET scan and a laproroscopy, they told me they had caught it in time and it had not spread. I still had a long path of treatment ahead of me but it was not all doom and gloom.

    So do not presume anything, this may move quickly and I recommend you do not read too much into that either as they are just efficient.

    Stay strong, I expected the worse and hoped for the best so I was very relieved when they told me it was caught in time.

    Remember you are not alone. There are lots of people here, at the hospital and in many other organisations with practical help and support.

  • Thanks Zantri, I've got my CT scan on Sunday afternoon. My hospital holds its meetings on Friday so I will have to wait a week. I think they will let me know either the 19th or 20th.

    Thanks again John

  • Thinking of you today John. Hoping all goes well xx

  • Likewise for your dad today. Its pretty straight forward. You have to drink around a litre of water with some sort of iodine in it first wait about 3/4quarters of an hour and then they take you in. I had two passes, they inject the iodine drug into your arm for the second pass.

    All this is to show up your lymph nodes. The scan you from neck to bum as this is where your lymph nodes are. When the put the iodine in your arm you get a warm feeling inside like you have drunk a hot cup of tea, you might also feel you have wet yourself!. You have to hold your breath on each pass for about 5 seconds, them machine speaks to you to tell you what to do..

    I asked the radiographer to make sure my results were flagged up so they get to my consultants meeting on Friday, which he confirmed they were anyway.

    Its not unpleasant

    Good luck.

    John

  • Thanks for your reply John. I will reassure my dad with the information you have given me.

    His scan isn't until this evening, just gives him longer to stew on what might happen.

    So this is useful. Thank you.

    Will be thinking of you and hoping for good results for you.

    Amy

  • I have my meeting with the consultants team tomorrow at 3:30 but have just had a phone call asking me to have an MRI scan on Friday. I had a CT scan last Sunday. As I understand it the CT scan is radio active so I couldn't have another so soon, hence the MRI but just receiving phone calls out of the blue is terrifying. Are they just dotting the i's & crossing the t's? The not knowing is torture.

    John

  • John - just posting v quickly to say that a lot of hospitals do a number of scans - PET, MRI ,endoscopy with ultrasound to get as good a picture as they can of the position of the cancer and to check for any possible spread to other organs and lymph glands .

    It's entirely normal and of itself doesn't signify anything ,other than that are being thorough .

    It's bewildering ,frightening ,dissempowering to be caught up in the malestorm of tests that come after the intial endoscopy .Gives you no peace and no time to process anything .Very panic inducing at a time when you're already in shock .

    They're being thorough but have no time to talk you through it . But they ARE very good at treating oesphageal cancer these days as so many of us can testify .

    Let us know how you get on - we're all rooting for you .

  • Thinking of you today John! Hope you get positive news! Keep us updated if you are able! Sending my best wishes to you and your family xx

  • Not good news for me,spread to my lymph nodes, maybe my liver. another scan on Friday and then a PET scan. I have been offered palliative care.

    Amy, I really, really hope your dad gets better news.

    Good luck

    John

  • John I'm sorry to hear this. But don't give up! I have been reading some stories about people who have done so well! I'm sure others on here can say the same! Lots of love

  • Have you had any more news John? Xxxx

  • Hi Amy, Had the PET scan yesterday and the hospital have a team meeting today. I am going to see the consultant again on the 3rd,so wont know anymore till then. Took a break from this site over Christmas, trying to do "normal" stuff. Hope you & your dad & family are OK you are in my thoughts

    John

  • Hi John, I don't blame you needing a bit of normality. I'm not sure what that is anymore.

    I hope you are feeling as well as possible.

    We still don't know much more about my Dad.

    He had the PET scan and yesterday he had the laparoscopy. So just more waiting.

    I'm sure you are the same, we just want treatment to start, whatever that may be.

    Thinking of you and Marie.

    Amy xx

  • Hi Amy,

    The worst news for me. The cancer has spread into a lymph node and my liver.

    They said I have a few months maybe longer with Chemo. I am waiting for a chemo appointment which should come through in the next 2 weeks.

    I truly hope your dad gets better news

    Thank you for being kind and talking to me on this site.

    The kindness and support of total strangers on this site has been a comfort.

    God bless

    John

  • John I am so sad to hear this. I don't know what to say.

    Always thinking of you and Marie.

    I hope that you can begin chemo soon and that gives you some positive results and keeps you well for as long as possible.

    Sending my love to you and your family.

    Amy

  • John where the ulcer / tumor is located makes all the difference in the world how they classify it. I found out that I had a 8.4 CM tumor located at the GE Junction I did have bleeding and it wasnt my first sign. I had been treating with my primary doc for difficulty in swallowing for about 18 months before the bleeding started. They initially thought it was esophageal cancer and finally settled on stomach cancer after determining that the tumor was ascending from the stomach into the esophagus. The treatment protocols are very different. I was given a cocktail of chemo drug eparubacin cysplatin and 5FU (cant spell them ) no radiation and I was told I had 14-+18 months to get my affairs in order. Your just beginning this journey and its going to be a rough one you have a lot of info to gather before you can determine where you stand. If you have esophageal cancer your chance of survival ratchets up significantly. The fact they have told you that by the time symptoms develop your in big trouble is primarily stomach cancer and they are right 94% wont make it past 5 years. I offer you a glimmer of hope I was told mine was metastatic stage 4 and given a max of 18 months by Moffit cancer center in Tampa Further more they would not attempt surgery as a total gasterectomy was the only surgery that offered a potential cure but its a rough way to go. Here is where you have to stand up buddy read everything your future depends on it. listen to what they say and get second opinions in the end its your life and you need to make the decisions on how hard you want to fight it or if you need to try and prolong your life. I am cancer free at the moment its looking pretty good.I had my surgery Jan 4 2016 and I'm telling you Im here but Im also miserable a lot of the time. You need to get your feet on the ground and know where you stand before you start listening to us survivors you dont know enough to decide what information is pertinent to you. And hearing multiple stories will only drag you down. Gather info and decide on your team. Dont be afraid to change the roster if you dont feel they are addressing what you want done. Make sure they know. The surgeons are the prima donnas with ego's the size of Texas. You need to stroke that ego but dont forget he works for you. A good balanced relationship will go a long way here and you need confidence in them and they need to know what your made of. Get your ducks in a row its gonna zig and zag a bit here and you cant really even make any plans until you know where everything stands

  • It's lovely to see you post here, and I'm not sure it's my place to say. But Johns wife Marie contacted me back in April to say, sadly, lovely John passed away :-(

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