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My 35 year old son has just been diagnosed with oesaphagal cancer and waiting for CT scan on Monday (result Wed pm) to asess what stage his cancer is. The last three days since discovering this have been strange and unreal. Today is the first day I've been able to tell anyone apart from the Macmillan nurse on this site, because I keep thinking it's all a dream and it won't really be true. He's a vegetarian, non-smoker and non-drinker. I can't think how this has happened.But I'm determined to keep strong for him - and his sister - and know a difficult journey lies ahead. His initial tests show adenocarcinoma. Three days ago I had never heard of it, nor of anything to do with this disease. But the Macmillan nurse was very helpful and supportive - now I am starting to accept what is happening and just want to 'be there' for him and his sister. Each of my kids lives in a different country which makes my fear even harder to bear - though my son has said when the time is right he will ask me to visit him.I wonder if anyone knows of someone who has made a good recovery from this disease, as in returning to work and being 'fit' again. I suppose that's not really a fair question, but it's the one which is at the top of my mind most of the time. I guess we will have to take each day as it comes and hope for the best.
It is absolutely a fair question and stand by to hear of loads of people who have made a 'good' recovery, as you define it. John in Grantham here, diagnosed at age 56, operated January 2007, and now running a local group of the Oesophageal Patients Association here in the East Midlands for fellow patients and carers, as well as back to work - OK, not full time as before but I used the saga to cut some stress from my life and deliberately cut down on my workload.
If I may suggest, please call the OPA helpline on Monday (see the OPA website for the number) - Dawn there is the most amazing woman and she'll put you straight on how positive the outcome can be. By the way, the chairman of the OPA had his oesophagectomy nearly 30 years ago and is still going strong.
All the very best to you and your family.
John Talbot, Grantham
I'm sorry you find yourself on this site. No doubt you will be going through a range of emotions and will have so many questions to be answered.
This site will hopefully give you some of the answers you are looking for. I find the forum supportive and the Macmillan Helpline has been invaluable.
My poor dad is much older than your son but he is going through the same thing. His cancer is inoperable but he has just started chemo and like you say we are taking things day by day.
There is no rhyme nor reason to who gets this awful disease, I hope the scan goes well with positive results for your son.
Firstly I am sorry you have to be here; the staging for this illness can be long and at times frustrating, just be assured that the team looking after your son are all at the very top of their profession. It can make no difference as to lifestyle; this evil disease can strike anyone at any time. Just let your son know you will support him and be there for him, then be prepared to stand back and give him a little space if he wants it. I am just over four years post op and am back in full time work including night shifts. I have rebuilt my conservatory, written a book and am carrying the Olympic Torch on the 24th July, so you see we can beat this thing! I know it is not going to be easy for you or your son, and yes there are bad outcomes as well as good ones, but what you must not do is give up hope. If you click on peoples profile names you can read their stories. It may be a good idea to get your son to also sign up to the Mac site.
It is not always the place we start that matters so much, but how we cross the winning line.
Dont beat youself up of how its happened as clean living does not guarantee that you cant get the disease.A lot of cases are caused by excessive acid.There are lots of us fortunate to be doing well after treatment.Myself 14 months post op and many more with years of survival.John has offered good advice about phoning O.P.A. they are such a help.Also it is worth looking at profiles.mine included which will give you some understanding and hope for the future.Griff
Thanks to all who responded - this is all very cheering and positive, and v much appreciated.. You have certainly reduced some of my anxiety and it's so good to know there are people out there with knowledge, and who are willing to share and support. I have tried to respond separately to each post but for some reason am not able to to that. So I am sending this as 'one for all' and hope that's okay. I am still finding my way round this site so hopefully will be learning more about how to work the funcrtions as time goes by! Thanks again for all your help and concern. lindy
Hi,sorry you are having to share this trip with so many of us here. As has been said, cancer is no respecter of previous health and lifestyle. I could have said something similar in terms of lifestyle, but it is as it is and we just have to get on with it.The diagnostic part is hard going as there is no apparent fix happening although behind the scenes specialists in their fields are getting to grips with the particular needs of your son, tailoring his treatment plan depending on a whole host of factors.
Referring to profiles of those replying will be helpful as has been suggested. As the plan unfolds we can give you pointers from our own experience. You are right to be there and offering support to the rest of your family at this time. No doubt you may be feeling powerless - its a familiar feeling to many of us at the stage you are at. Its so important to remain as positive as possible. It's not all gloom and doom.Early days yet to be focussing on fitness for work.
If its possible for your son to keep working whilst all the diagnostics are going on that can be helpful. It was for me. It gave me a focus for productivity rather than being at home worrying. The down side was that the team had to learn not to panic if I got a wave of pain / discomfort and had to stop talking for a bit whilst it passed. Being open with them allowed my illness not to be the "elephant in the room" . I was able to work sometimes between chemotherapy treatments and up until I went in for surgery which in my case was an option I was given. All being well I fully intend to return to work once I'm fit enough which I guess will be towards the end of August / early September - seven months after surgery - plan to do part time for a few months then back to full time in the New Year.
I do hope the results your son receives are good for him and that he has some choices that he can make - having options is so empowering. All the best to you and yours. Stick with it - and us!
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