Hi, I'm Bill 56, Scotsman with T3N0M0 Tumour in oesophagus. Having 4th chemo this week. It has not worked. Tumour grown. Nil by Mouth for 10 week. No contact with oncologist through treatment now having to seek alt/private/abroad plans. Any advise plea

Hi Bill, that's a disgrace how you are being treated at a traumatic time of your life! I'm am fortunate to have received great care from my hospital here in Northern Ireland altho iv had alot of complications and recurrence I'm still here and greatful every day.  I do hope your hospital get there act together and give you the care you so deserve.

Hi Red, I am 3 weeks post op and have been told that I am now cancer free. 17 nodes removed only 3 affected, tumour cut out to healthy tissue. I have been told that precautionary chemo sessions are the norm and I MUST go through with it. I am confused as the pre op chemo did not affect the tumour and was stopped after the 3rd session. I had a terrible time during this with constipation, nausea, numbness, depression and really do not want to go through it again. My surgeon has told me it is belt and braces and suggest that I may have a different strain of cancer that could come back and this chemo session may prevent it. I am not sure whether I go ahead but feel that I am being frightened into going through with it. Feeling blessed that operation was carried out and successful but frightened of the chemo.

Hi Bill 

How are you doing post op? How was the op?  I hope you're okay. 

Take care

Hi Suzie, operation went well, 17 nodes removed 3 affected, tumour out, surgeon states that I am cancer free. They are demanding I go ahead with post op chemo which I am dreading. Feeling better each day as the pain relieves and I am able to take less painkillers. Off the morphine for a week now and able to spread the co-codomol a little throughout the day.  Starting to walk the dog and took my daughter to school these last 3 days. Feeling blessed but terrified off the post op chemo sessions and the treatment I received the last time. How are you doing, Bill

Hi Bill,

It's so good to hear frim you.  So pleased you're can se free and the pain is reducing. I was told there would be a recovery period then post op chemo. I'm terrified of the surgery. Now that we know chemo is like it's also scary.  You're 2/3 of the way there! I'm impressed you have the energy for the school run with a little one. Is the next lot of chemo after Christmas?

Hang in there! You've already come so far on the journey!

Hi Bill,

I'm a bit disturbed by the treatment you've described in this thread. It doesn't sound satisfactory at all, and I'd be curious to know more.

Was your surgery performed by the Scottish NHS hospital which you were originally dealing with? Or did you make private arrangements? Was the lack of communication with your original oncologist ever resolved?

There's no need to reply if you don't want to, of course. But your posts seem to raise serious questions.

All the best, anyway.

hi bill,wow,so sorry to hear of your treatment by the system,you have answered my question though,go private or go nhs.luckily i took out private insurance 2 weeks before any symptoms.so my mind is made up now.good luck bill

Hi PTP, sorry for the late response but have been spending time with my daughter and recovering from the operation that is going extremely well. The surgery was at the Royal Free in Glasgow and a lot of the reason for me not wanting to continue to complain was that I was told that the operation was a complete success. He reckoned the best he had done and that post op chemo would not be necessary and he would give me 10+ years from the initial results. Anywhoooo, a few months down the line, surgeon changed his mind and insisted I have post op chemo for the oncologist to then state that he was not offering it as he thought it "futile". I had a 4 response to pre op chemo so he said no point in post op. High Risk of cancer returning as 2nd opinion oncologist pointed out from pathology reports that I had R1. Tumour butted up against other tissue so high risk some left behind. Was never told this before or I would have felt differently about allowing my oncologist to refuse post op chemo. 2nd opinion oncologist also pointed out that poor reaction to post op chemo was to do with malnutrition as original oncologist insisting I hold off from having feeding tube as long as possible. Lack of any contact then and now meant I Lost 4 stone in 1 month. So now I have to accept my fate, complain about the original team so that my treatment is not repeated with someone else and pray that this is all God's will. I hope that you are doing well, Kind Regards, Bill P.S I do feel that our oncologists and surgeons read these posts

Hi Suzie, sorry for the late response but have been spending time with my daughter and recovering from the operation that is going extremely well. The surgery told me that the operation was a complete success. He reckoned the best he had done and that post op chemo would not be necessary and he would give me 10+ years from the initial results. Anywhoooo, a few months down the line, surgeon changed his mind and insisted I have post op chemo for the oncologist to then state that he was not offering it as he thought it "futile". I had a 4 response to pre op chemo so he said no point in post op. High Risk of cancer returning as 2nd opinion oncologist pointed out from pathology reports that I had R1. Tumour butted up against other tissue so high risk some left behind. Was never told this before or I would have felt differently about allowing my oncologist to refuse post op chemo or any doubts I had in having it. 2nd opinion oncologist also pointed out that poor reaction to post op chemo was to do with malnutrition as original oncologist insisting I hold off from having feeding tube as long as possible. Lack of any contact then and now meant I Lost 4 stone in 1 month. So now I have to accept my fate, complain about the original team so that my treatment is not repeated with someone else and pray that this is all God's will. I hope that you are doing well, Kind Regards, 

Hi Bill, sorry to jump on so late after posting. Just wondered did you have to have more chemo once they told you it hasn’t shrunk or did they go ahead with the op?

Hope your recovery went well!