Diagnosed yesterday - Absolutely devastated

Hello IanT

I’m sorry you find yourself here and it’s quite understandable that you are in a mess, you wouldn’t be normal if a cancer diagnosis didn’t worry you.   It’s a long time (18 years) since my husband was diagnosed with OC and he is able to live a relatively normal life despite a very difficult start. 

The waiting (and the Google temptations) don’t help at all but your consultant seems to be keeping things moving quite quickly so try not to stress too much.  Once you know all the facts and you and your medical team can plan treatment you will probably feel a bit calmer, it’s the not knowing that plays mind games. 

Take care and let us know how you get on with the consultant x

Thank you, it is the not knowing and waiting that's not helping even though it's only been 2 days.  Time seems to have come to a standstill.  What feels like hours has only been a few minutes..   My consultant called me yesterday to say he has spoken to a surgeon about my case in preparation for they the CT and biopsies  so that's giving me some hope that he's even considered a surgical solution.  The MDC will not assess the case until  a week on Monday but he will see me before then to advise the grading.  It's a living hell at the moment but massively encouraged by the fact your husband was diagnosed 18 years ago and is still here, thank you for the kind words. 

Very sorry to hear your news, but keep positive. i was diagnosed last August with a 10cm malignant tumour in the oesophagus tube. I have been having chemo/immunotherapy which is going well with just one cycle left to go, and i am eating and swallowing better. Its an awful shock at first but things can improve.

Hi Ian

It cones a shock to us all, I was diagnosed on the 24th December, with a stage 4 not, and put o to a management path, as it had spread to my lymph nodes, just had my second, chemo/immunotherapy treatment yesterday and feeling OK, my tumour was only 3cm, but its the spread which means I can't have an operation.

Avoid Google, it's so misleading, I did ask for a prognosis as its irevelant, you need to be strong minded, with a will of iron, you can't change the situation, or diagnosis, but it gets easier as a plan is produced and you start to follow a program.

There are so many positive stories, stick to this forum and ask questions.

But I wish you all the best.

Arthur

You are spot on.

Hi Ian 

So sorry you’ve had to find your way here but know that you’ve landed amongst friends! I think where you are now is probably the hardest bit to deal with as you’re in shock, trying to process what’s happening and trying to cope with the excruciating waiting for things to happen. It will get less scary especially if you can try not to look too far ahead and to focus on what you do know rather than the what ifs. This forum is a great way to get some hope and understanding and there’s lots of us who’ve been through the mill and are still here and smiling at least most of the time! 
sending you lots of strength and positive vibes - do keep us posted

Jane

Thank you Jane, it's certainly been the hardest days I've ever faced but glad I've found the forums.

Hi Ian. I know its hard but try not to worry too much. I'm sure you will be grand.

Similar to yourself, im 45 and was diagnosed last October having been found to have a tumor at the junction between my oesophagus and stomach. That was 7th October (a date in will never forget) and I am now currently recovering well from surgery which was 4 weeks ago on the 23rd Feb.

My diagnosis came completely out.of the blue and like yourself, my initial reaction was that if the cancer didnt kill me (which i was convinced it would) that my life would be ruined anyway by the surgery. I was all doom and gloom for a week or two.

My advice. Keep off google and throw your effort into getting yourself as fit and healthy as you can as it will help you in the long run, both mentally and physically. This was the advice I was given and I believe it helped me immensely.

Soon as I was diagnosed, I joined the gym, started running and embarked on a massive health kick to get my diet sorted to cut out all the junk and get myself in the best shape possible. This helped change my focus from fear to determination. I've also got 2 young kids and I was wanted to give myself the best shot of beating it for them more than anything.

To give you an idea on what hapens next; Following my diagnosis in October I had a flurry of scans and tests, chemo for 8 weeks over December and January, then surgery at the of Feb.

Currently position is that i'm recovering pretty well and fairly positive about the future. Even managed a couple hours in the pub with all my mates this weekend and a decent walk out with the dog which felt like a real milestone.

Had a meeting with the Oncologist yesterday and they are really pleased with progress and confirmed the operation had been as successful as could be expected.

Chemo to start again mid April for another 8 weeks then hopefully i'm on the home straight.

Going to be a whirlwind for you over the coming months but you will surprise yourself with how well you cope.

Wishing you all the best.

Russ

Hi Russ, thank you so much for sharing this with me.  I'm slowly getting to come to terms with the situation.  I had a call with the Gastroenterologist who performed the endoscopy last Thursday how has confirmed its adenocarcinoma. 

He then called again later to say  the CT scan is showing no spread to distant organs but there is evidence of localised spread to 2 lymph nodes.

He could however not confirm the stage, he said the MDT needs to meet and that I will likely need a PET CT next.  

I'm relieved to hear it's not spread to distant but not knowing if I will be suitable for surgery and being in limbo is just so hard.

The forums and stories from people like you are giving me confidence.  I'm trying to re focus and do exactly like you did and get myself fit and ready for the fight of my life.  The thought of surgery and recovery is scary but sure bets the alternative, I just hope it can be surgically removed.

Focus today is practicalities, getting a will sorted and all my finances in order so my wife and family knows what's what. 

Then I'll be looking into getting myself a fitness routine to get me ready for what's to come.  Eating anything solid is agony, but I can manage thinks like Weetabix, mashed banana, mashed potato and fish seams to go down without the pain I get with any other meat.  Huel, protein drinks and determination as I'm not ready to die.  My kids need me.  

One thing is for sure, if I get through this I'm going to be raising awareness about the fact heartburn and acid reflux can kill you.  I had no idea about Barrett's oesophagus or oesophageal cancer this time 6 weeks ago after suffering with acid reflux for years and just relying on Rennie, Gaviscon and omeprizol..

Your initial reaction is completely normal so don't beat yourself up about it. My world felt like it was going to crumble when I heard the 'C' word and after a week or two of worrying and self pity, I had a hard word with myself and decided there was no point worrying about things I could not control (test results etc) and instead focusing on the things I could control.

Talking to people helped. Friends, family, work colleagues, everyone! I found getting it out there and telling peope what i was going through made a difference and as a result of this many people also reached out to me and shared their stories and experiences which were also helpful to hear.

From what i can gather, your ability to cope with and recover from the surgery is a significant deciding factor is whether you are a candidate to go down the surgery route. Possibly even more so than the staging. You have age and fitness on your side in that respect so are probably better placed than most to handle surgery given the average age of diagnosis for this type of cancer is generally people in their 60's and 70's. I think this is why the statistics make for such grim readings.

If your cancer has not spread to other organs then this must be viewed as a positive. They will be removing your lymph nodes as part of the surgery anyway. They took away 59 of mine even thought there was no spread detected.

Im terms of the surgery, I was absolutely petrified. The thought of being put to sleep and waking up with life changing alterations to my stomach and internal plumbing put the fear of god into me. The reality is, it's not as bad as I envisaged it would be. The whole thing was worse for my wide and kids than it was for me. Now, 4 weeks post surgery, I feel fairly positive about the future and think that life might just be ok.

Gone are the days i'll be going out on an all day drinking session with the lads but i'll take that on the chin if it gives me another chance at life.

Same as you. I never heard anything about cancer from acid reflux and half the blokes I know have been living off omeprazole for years. Blokes need more awareness of this, no doubt.

Russ