Cancer in my oesophagus

Hi.

Thought I'd start to share my story. I have been reading posts here for the last week and it is nice to see a community. I'm 42F from ireland.

My Journey started 2 months ago with a trip to the doctors and ended up being diagnosed with cancer in my oesophagus last Friday.

I have had no symptoms apart from chronic heart burn. Which I've had for years so didn't even think of it as a symptom to be honest.

An endoscope turned up what originally they thought was low grade displasia from barrett's but ended up being cancer.

They think they might have caught it early, I had my ct scan yesterday and I have my pet scan and eus next week hopefully and then they will decide on a treatment plan.

It still feels very surreal like it's not really happening. Overthinking every little thing. The oncology nurse rang me today and said they did see something on the CT scan but they are waiting for all my tests to come back before they talk to me. Does that mean more than the oesephogus? I don't know but mind is whirling.

Anyway I know some of you guys have gone through this and I'm reaching out for some community spirit. As we go through this together. 

Ruth. X

  • Hi Ruth.

    Dare I say welcome to the ' Oesophageal club'. 
    there are LOADS of us in the club. ........excuse the pun!
    We seem to growing by the day!. I am trying to get us all on one board. If you go to my name, followed discussions, RayB, oesophageal cancer diagnosis.

    Anyway- it is my husband in the club, but I am his administrator (:. Aka the wife. He has chosen not to read anything at all, while I am the one that scoures for info. Be warned the net reads mostly like a horror show!
    Most of the posters , us included, are just like you. Mild symptoms, thought a bit of acid reflux, maybe an ulcer or two, went for endoscopy, bingo OC diagnosis.

    We were/are early and have just finished treatment- I always say for now, as to say  'visable'disease free' seems somehow, to me anyway, tempting fate.

    I think the treatment is pretty standard.depending on stage/size. 4x pre op chemo . Op. 4x post op chemo. We have been 'living the dream' for the last 8 months. But just discharged from dietician and Oncologist. Just the surgeons now. All feeling a bit weird.

    Whirring brain is compulsory I am afraid- read my early posts (:, I absolutely convinced myself that 'this was it' absolute had to be the worst it could possibly be. As for CT scan, short answer - who knows,until all is in and taken with everything else it is just part of the picture. Once we had the treatment plan, whirring calmed down, and it was a case of cracking on, now it is starting to whirr up again as I am thinking 'what now'?

    Surreal OMG- just a bit. We look at each other and think/say "what just happened ".!,

     

    Anyway ask away.

    best wishes

    Hilts

  • Hi Ruth,

    I hope Hilts post has helped. It is my husband who was diagnosed at the end of October. Our journey definitely seems to have been a longer one initially as my husband didn't start treatment until the end of January which was extremely stressful and lots of brain whirling and still is! However the care has been excellent and COVID 19 definitely delayed things and that situation has improved. 
     

    My husband has had the standard 4 x FLOT and whilst he had side effects, nothing major and he managed them. His advice would be drink lots of water (he took 2 flasks upstairs at night and drank them both! We are now waiting to 'Meet the surgeon'. Re the CT Scan I don't know either - it's hard but they will tell you when they have all the info. My very best wishes to you and the members on here are very supportive and will help if they can.

     

    Hilts mentioned the other link and I'm going to post a question on there now. 
     

    Kindest regards,

    Mandy (aka Milly)

     

  • Hi Hilts, 

     

    Thank you for replying. I will have a look through your posts. I really feel like there is a lovely community spirit here albeit for less than ideal reasons.

     

    I am taking two weeks off work starting next week just to try and process everything and hopefully have some more answers for my job when I go back. 

    Did your husband continue working? I am thinking of possibly going part time for the moment. 

     

    Ruth. Xx

  • Hi Milly,

    Thank you so much for your reply. I will definitely keep in mind about the water, something I am guilty of not doing is drinking enough water so will try and get into the habit now. 

     

    Ruth. Xx

  • Hi Ruth.

    No, husband has been ' on the sick' throughout.

    I guess it really depends on what your job is. He is public facing, teaching etc so there would not have been any working from home etc. Also during chemo he was told to 'shield', so again couldn't lecture.

    Although he did okay on chemo, he did feel blotto for a lot of it and quite a lot of nausea. I really don't think he could have possibly performed in lectures as his brain was quite foggy, whether that was down to the chemo or the utter shock of the whole thing, who knows.

    He finished treatment ( for now, always say this not to tempt fate !) 3 weeks ago and last week started to do some 'marking'- to keep the old grey matter busy, he was/is getting a bit bored, which is always a good sign. He is nowhere near 'fit' to go back into the whole bear pit yet. I am going to force him to stay off until September . Depend I guess how long you'll get full pay for. If you go part time, you will have a hefty pay cut, whereas going sick you'll retain the higher rate.

    All the blokes that have gone through this at our local unit have all also been on the sick.

    My view- if you can go sick , do it (:

  • Hi Ruth, so sorry you have had this awful news. Its such a shock isnt it. My husband was diagnosed in November, after hiccups and trouble swallowing. It had spread to his lung and lymph nodes. At first I just thought this is it, death, but, have since learnt, (not from medical team) that a lot of people who have even very severe oesophageal cancer go on to live for many years with it, and it is treatable in many ways. My husband is having EOX chemotherapy and doing really well, in January he could only get soup down, now he eats everything and has tons of energy (out painting the fence today!) Please do feel free to come here for any support or questions and am wishing you all the very best of luck for your treatment. 
    daisy 

  • Thanks for the advice Hilts,

    I work as an Area Manager for a food retailer, as well as other jobs that I doneithin the company.

    I used to be quiet good at my job but the last few months my productivity has definitely faltered, I have had overwhelming tiredness for awhile now. Cancer kicking my boots before I knew I had it I think.

    I think I will probably at least drop to part time depending on treatment, I know for now I need to drop some of my work load and concentrate on getting back to my full.health. 

    Ruth xx

  • Thank you so much Daisy.

     

    Wishing you and your husband the best in his treatment. Xxx

  • Hi Daisy 71, 

    This post caught my eye. I am posting mostly now on RayB 's board, but always look out for you elsewhere .

    Glad your man is earning his keep. I need to kick mine in the proverbial butt. LOL. I suppose I should be a tad more sympathetic given what he has been through, but hey ho, why would I change a habit of a lifetime giving him 'jobs' to do (:.

    Really glad your man has moved on from cottage pie, nice as it can be, full fry ups, steak etc is better. I suppose for us, it was the choice of eating what you wanted was taken away with the clogging, you had to eat what you could rather than what was wanted.

    That chemo is amazing when you think about it. Same effect on my husband tumour as yours. Shrank the f*******. down. 
     

    We have decided to mark  the end of treatment (for now!) with a new tattoo each. We have almost decided on what and where , but one thing is for sure it won't be of an oesophagus !!! LOL -or maybe we should as a type of eulogy ........... nah

    keep the faith

    Hilts