Next Steps ?

Thank you so much to those who kindly replied to my recent post about radio frequency ablation. I went in hospital for the day, about 2 weeks ago, had a general anaesthetic so the doctors could examine the top of my oesophagus more closely, if suitable they were going to give me some RFA at the same time. Unfortunately they didn't consider I was suitable for that treatment, because they found this area was all affected as well as extending a long way down. I was told I would get an appointment as soon as possible to see the surgeon who would tell me what they could do. I rang the liaison nurse who told me the same. I asked her about the operation they had told me about to begin with, but she said the higher up the oesophagus they have to go, the trickier it gets, because the windpipe & voice box would be affected. She mentioned radiotherapy was sometimes used. I realise she isn't able to tell me what's going to happen but, because of Christmas & New Year I have to wait until January 9th for my appointment & that seems such a long way away. Has anyone had the oesophagectomy where the whole of it is removed? Or has anyone had radiotherapy for this? I'm feeling so afraid & worried. Thank you, Blondie.

4 Replies

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  • Yes I have had the whole of my oesophagus removed and part of my stomach, the join is in my throat. My voice does sound a bit quiet and gravelly at times but most people don't even notice it. I had an unfortunate wait of almost 2 months was it worth it to get it right, yes it all happened 23 yrs ago. So travel with hope and best wishes, keep us posted sally

  • Hi Blondie-B I had the whole of my oesophagus removed over 7 years ago and I have to say the hardest part of the whole thing was waiting for appointments. I found the best way to cope was to keep busy, doing things I liked to do from shopping to short breaks away. You might try speaking to the specialist nurse again telling them your concerns but most of all take heart from many of us who are still here and enjoying life to the full! Keep in touch.

  • Sometimes cancer towards the top of the oesophagus is squamous cell carcinoma (rather than adenocarcinoma) and this does get successfully treated with chemo-radiotherapy without the need for surgery, but it would all depend on the stage it has reached and a number of other factors, so do not let this generate any unrealistic hopes. The surgeon needs to be able to remove the affected part and leave a safety margin. All of this would be dependent on the detailed scans and so on. But in itself, surgery higher up is not unusual.

  • Hi Blondie-B

    I had a radical (IE Total) 3-stage gastro-eosophagectomy with cervical anastomosis ( join in the neck) 25 years ago. It's not what you would wish for for Christmas, but it is eminently survivable and so much better than the alternative.

    Here's hoping that at worst you have an early squamous treatable without surgery. Let us know how you get on.

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