Surviving Oesophageal Cancer

Hi , I’m new to this site but wanted to share my experience of living with oesophageal cancer. I realise that I’m one of the lucky ones in that my cancer was caught relatively early and was therefore operable.

I was diagnosed with cancer of the oesophagus in February 2007 and after many tests and two sessions of chemotherapy I underwent an Ivor Lewis operation, which is major surgery to remove the cancer, and lasted around seven hours. I responded well throughout and remained only five days in intensive care before being moved to a general ward and released a week later.

Since then, I’ve continued to do well but suffer from dumping syndrome as a result of the surgery. This is an unpleasant side-effect that causes fatigue, sweating and nausea after eating. Also, I now have to have vitamin B12 injections every three months as my body can no longer process this essential vitamin.

All in all, I feel ok and have remained positive all the way through. I realise I’m extremely lucky and count my blessings every day.

I’ve read so many negative reports about this type of cancer so I felt I had to share something positive for those of you who have, or know someone with, Oesophageal cancer.

All the best

Crystal

  • thanks Cystal for your post was good to read, my mum has had the op you had and is recovering at the moment, so nice to read such a positive story. good luck for the future xxx
  • Hi there Donna and Rose

    Thanks for your kind words. This site is amazing in that it brings together such a wealth of fighting spirit, humour and caring attitudes such as yours. In your own case Donna, having read your profile, you have been through so much and yet you face it all with such strength and humour. I know there are really bad days and we all get scared but I take my hat off to you for being so lively and funny. And for you Rose, it’s obvious that you are so supportive of your mum and I do wish her all the very best for the future.

    Best regards

    Crystal

  • Hi Crystal,

    It is nice to read your story re OC and as Donna has just said, please continue to post as it does give a glimmer of precious hope to others that have recently been diagnosed. I dont know if you have seen it, but there is a main thread called " New (Dad has Osophegus Cancer)", about OC, maybe you could also post there. Unfortunately my Dad passed away from OC 8 weeks ago, and I know first hand how time is so precious with this type of cancer and am glad that you are still here fighting to tell you tale.

    Much love, Michellexxxxxxxxxxxxx
  • Hi Crystal I don't know if I have spoken to you on any other threads, i get a bit confused when I chop and change threads!!!
    Anyway I am so pleased to hear a positive story in relation to this nasty cancer, my husband was diagnosed in February last year and also had an Ivor Lewis, Unfortunately the Chemo hadn't shrunk the tumour and the surgeon was not sure whether he could do it so he did the operation the opposite way round, going in the back before the stomach, he was able to remove the tumour but the operation lasted ten hours, ten hours of me wondering around the hospital!!! He also had a problem with dumping and found that it was sweet things that were causing the major problem and he never quite got the hang of little and often!!! Sadly the cancer spread and he passed away on the 2nd April.

    You stay positive and keep posting it is so good to hear positive news and it gives everyone hope, this cancer can be beaten so nobody must give up the fight.

    (((((((((((((((((hugs)))))))))))))))))) for a special lady

    Teresa
    xxx
  • Thanks Michelle, Karen and Teresa for your encouraging words. Reading your profiles I see you have all been through such a lot and I admire your courage and fortitude in helping your loved ones.

    I am so sorry Michelle that your dad passed away. I wish you and your family all the best for the future. You too Teresa have my deepest sympathy in the loss of your husband. I'm sure you've all found much inspirational support on this site, as I have.

    Teresa, you're right about the sweet things exacerbating the dumping syndrome and the notion of 'little and often' is difficult. Nowadays I tend to please myself.

    Karen I sympathise with your partner's eating issues as it causes a lot of concern for those caring for us. I overcame this to a certain extent by using a juicer to juice broccoli, other green veg and fruit. The rest of my diet consisted of strained soups, full fat cream and my favourite - ice cream - which I still eat by the tub load, and as a result have gained 2 stone although I was told that I would never put weight on again. Ah well LOL.

    Best wishes to you all
    Crystal

  • Hello Crystal,

    Hope you are well. I noticed on your bio that like me, you have also been diagnosed as unable to absorb vitamin B12 because of the Ivor Lewis procedure. Did they say if yours was Pernicious or Macrocytic anaemia ?

    I'm still waiting for the results of more tests before I start my treatment (the sooner the better) so would like to know a bit more about them from a patients perspective.

    Where do they inject, is it just into fleshy bits or a vein ?
    DOES IT HURT ? (I'm a mere male !!)
    Do they inject a large quantity ?
    Does it leave a 'lump' at the site of the injection ?
    Does it take long to work ?
    Can you feel the effects beginning to wear off towards the end of the twelve weeks ?
    Have you been on them long ?

    I'd like to know what to expect.

    As for dumping, I suffer more from it now than ever but I think that is because my mealtimes have become irregular, I don't eat at the same time every day, and I suspect I have developed a milk intolerance.


    Thanks
    Mick
    xx


  • Hi Brumigem - how are you? Don't worry about the jab, it's a doddle after all you've been through, but of course, as you're a bloke it will probably hurt a lot more Rofl.

    I don't have pernicious anemia, it's just that after the op I could no longer absorb the vitamin. This was discovered through the 3-monthly check-up after the op, so I've been having them since last August.

    It's injected into the muscle of your arm which is kind of painful but not for long - If you smack the nurse it makes you feel better. It doesn't leave a lump or any mark as it's a very small needle. For me it takes a couple of weeks to pick me up and give me energy and lasts until half way into the second month, then my energy declines again until the next shot. A couple of weeks prior to the jab my entire body hurts and I'm seriously lacking in energy again. I think part of this is due to the dumping syndrome. I've found that fruit ice cream really helps with this - try Delmonte Fruit Burst Raspberry and Peach - it's ab fab.

    Hope this info helps Brumi - keep grinning.
    Best wishes
    Crystal



  • Hello wonderful people and thank you. My dearest partner of 7 years John was diagnosed with this cancer in may of this year after he was diagnosed with barretts oesophogus 5 years ago, he was having 6 monthly endscopies and the last one in april showed more abnormalities and a barium swallow showed a tumor, after several tests he was diagnosed with stage 3 oesophogheal cancer which had affected the lymph nodes. Like you crystal he has been having chemo of cistaplatin,epirubicin and 5fu, he has his last cycle this coming thursday then the remaining 3 weeks of 5fu. He has to have a ct scan in around 4 weeks time to see if the chemo has worked (by shrinking the tumor and killing any loose cancer cells) and on 2nd september we are seeing the oncologist for the result. John will then undergo surgery and with all the hope in the world we will be told everything was a sucess. I thank you all because i am starting to feel really afraid as i have heard so many sad tales on here with this type of cancer that i stayed away. Crystal, what are they doing to ensure they are screening you properly? i am just so scared this will come back or things wont work out, he only struggles to eat occaisionally and has also gained weight since being diagnosed although doc says thats the steroids, it just seems so unfair especially as i buried my last husband with bowel cancer and here i am again but thank you to you all for sharing your stories and at long last giving me some hope. God bless you all, big hugs and genuine care
    Sal
    xxxx
  • Hi Sal

    I’m sorry that you and your partner find yourselves on this particular journey and that this is the second time for you. As we are all different all I can do is walk alongside you for a while and hope that it gives you some comfort and hope.

    My own tumour was quite large, 7cm, and the chemo only reduced it enough for me to swallow, which was a huge relief and meant that I could get myself in shape ready for the surgery. To this end I devoted my time to eating, brisk walking and lifting weights. I feel it’s important to adopt a really positive approach and to help yourself as much as possible because the surgery is really major. Having said that, I’ve done plenty of research and there are long-term survivors out there of this type of cancer. I hope John can build himself up in various ways if he is fit enough, particularly in breathing exercises. There’s no need to overdo it, just do what he can. It’s also important for him to eat well if he can.

    My follow up screening consisted of scans, blood tests and examination by the consultant 3 weeks after the op and then seeing the consultant again in August, Sept. and Oct 2007. After confirming that all was clear the consultant said he would see me one year hence in Oct 2008. Right now I feel good, apart from the usual fatigue from the dumping syndrome and malaise from the lack of vitamin B12.

    It’s good if you can keep positive Sal although I know there can be dark places lurking. I hope I’ve been able to answer your questions and I’m here if you need to know more.

    Best wishes - Crystal



  • Dear Crystal

    Thank you so much for your response and kind words it is of great comfort to me. John has his 3rd and final cycle tomorrow, it is so hard to take in at times as he is so fit, even the doctors say it is hard to believe, he is still going out to work, gardening and general mantenance work even with the hickman line in, although he is very careful, he has a great sense of humour which is helping amazingly. Although I am anxious of the future (probably due to past experience) I never show this to John, you know what it's like putting on a brave face and being positive, I just want to hear the medical team tell me everything is fine, nothing to worry about but that's asking for a miracle! I too have read all about the operation and what it entails so I admire you greatly for coming through this with such grace, John doesn't want to know what they will do, he just wants to have chemo, have the op and get better without knowing the gory details, I shall ask if this will be possible, sometimes it is best not knowing. Again Crystal, thanks so much, I really do appreciate it

    Love Sal

    xxx

  • Hi Sal,

    We have not spoken before but you really must speak to Brumigem - he's been through the mill and is living proof that there are GOOD things out there that can be done for this type of cancer. I'll request you as a friend and look out for Mick, Brumigem, i'm sure he will be a godsend to you.

    Lots of love to you and Mr Sal

    Love Wend x
  • Hi Crystal sorry if I am butting in on your thread, would you mind if I asked a question? What is the "dumping" you refer to, i have heard this before and am not sure if that is what my mum is experiencing at the moment, she had her op in May (feel free to read profile) and is often just slightly sick kind of balking but nothing much really comes up, its just a nuisance for her. Her stomach still seems a bit off too, either too much toilet activity or not enough!!! All this said though she is doing well and I am really proud of her.

    As Sally says it is so nice to hear such a positive story and you taking the time to support others going through this is great.

    Best wishes,
    Rose x
  • Rose, an extract from the OPA (Oesophageal Patients Association)

    DUMPING

    A sensation known as Dumping Syndrome occurs when the food you have eaten passes rapidly through the system and may give rise to some of the following symptoms: dizziness, possibly fainting, feeling very hot, sickness and pain in the abdomen. Diarrhoea or frequent bowel movements may follow. It can be unpleasant and distressing, but is not serious and generally the frequency of attacks becomes less. The effects normally disappear in half an hour or so. For Oesophagectomy patients it generally occurs an hour or more after eating (late Dumping). Those who have had a gastrectomy may be more prone to dumping, and this may occur sooner after eating (early Dumping).

    Dumping is a fairly complex subject and we have factsheets available which give more detail.

    More info at.............................http://www.opa.org.uk/

  • Thanks Mick. That sounds like its probably what she has then. Scan next week to check her lung, fingers xd no change there. Hope you are well xxx
  • Hi Sally

    Hope the chemo goes well for John and he sounds very fit physically which is a huge plus, as is a sense of humour J. Just take a step at a time if you can, as that will save you a lot of worrying Sal. It’s hard to be a carer and you’ve been there before so are even more fearful.

    As Wend says, I hope you’ll also chat with Brumigem here as he’s been through such a lot and is an amazing example of someone who’s been through all this himself – plus he has a lovely sense of humour when I’ve read his posts. Please let me know how John is doing with his chemo etc.

    Hi Rose – you’re not butting in, you’re very welcome here. It’s very early days after your mother’s surgery and she will experience all kinds of funny goings on in her tum. There are days of sheer constipation and then days of hovering round a bathroom door just in case Lol. As for eating, to be frank I found it a bit of a nightmare for quite a while. Mostly, after swallowing I’d start retching and I just couldn’t find any food that really appealed or I cared to eat. It settled down eventually and it sounds as though your mum is going through similar, but she’s doing alright by the sound of it.

    Hi Brumi xxx thanks for being here, we need your humour J How are you and when do you start your vitamin B12 injections? I see some lovely photos on your profile but none of you? Keep posting as I want to know how you are doing.

    All best things for you all - Crystal

  • Thanks Crystal, much appreciated xxx
  • Hi

    Thanks Wend, I will contact Brumigem and look out for their posts, John never had his Chemo last thursday as his blood count was too low so hopefully it will resume this Thursday, each day draws nearer to the operation but thanks to people like you Crystal I have been made aware of a few problems that may occur such as dumping which I had not heard about so I will not start to stress if this happens, I just wish it was all over now but just take it day as it comes which is all we can do, funny, you think you have it all panned out, looking back now I wish 1 in 200 that I had done more in demanding more intense screening of the Barretts but I honestly didn't think John would be that contract cancer through it. I send you all my love and best wishes
    Sal
    xxxx

  • Hi Sal - I'm sure you did everything you both could in following the regular screening protocol for Barretts oesophagus.

    Just try to focus on getting through the next session of chemo and ensuring John is as reasonably fit as he can be ready for the surgery. I was reading in the Daily Mail today that this operation can now be performed by keyhole surgery, but apparently there are only a handful of places that use this procedure. The article went on to say that recovery time from this is a few weeks as opposed to around a year with the Ivor Lewis procedure which I had.

    Let me know how John gets on on Thursday and make sure you have some quality time for yourself too.

    Crystal xx

  • Crystal
    Thanks so much for your kind and appreciated support. John had his CT scan on monday and we had a letter from the hospital yesterday with an appointment to see his oncologist this tuesday so i guess we will know the results then. I am not sure how i feel, i so want to be positive but there is this thing nagging in the back of my head. He is eeling very well and at my daughters wedding reception last night people were really suprised at how well he looked. It's a long journey we now have to face and the adaptions we have to make after the operation, i just want it done and then back to how things were but i know they will never be the same again. I will let you know as soon as we know the results. I hope you are well and everything is dandy with you
    Love Sal
    xx
  • Thinking of you both Sal.

    Fingers crossed.

    Mick
    xx