Post treatment

Hi

I was diagnosed in March 2021 with squamous cell carcinoma, mid-oesophagus, T2N0M0. I was unable to swallow anything at this point, so had a feeding tube in my stomach and I syringed everything through that - water, Fortisip, medication. I had radical chemoradiation which was 4 rounds of cisplatin, with 12 weeks of capecetabine chemo tablets (dissolved and syringed through feeding tube), and 25 radiotherapy sessions which started on the same day as the second cisplatin. I was lucky that my tumour shrank a bit very quickly so I was able to nibble some foods (mostly crumbly cheesy savoury biscuits) but nutrition was still taken via the feeding tube. Towards the end of the radiotherapy it is normal for the oesophagus to become inflamed and swallowing becomes more difficult again. This lasted for a couple of weeks for me then it eased off. I slowly started eating more foods, still very soft foods to begin with. Even though I was able to eat, I had my feeding tube in until after the first set of tests (gastroscopy and ct scan) then as they were all clear and I was maintaining my weight, the tube was taken out. Tests show that I have scarring in my oesophagus and I still have to take small bites and chew everything thoroughly. I have a plain diet, no spicy or fatty foods, but I manage.

I am on the SCOPE2 trial but was not chosen to have the higher dose of radiotherapy, I just had the standard dose. I have read posts on here from people who had the higher dose and their oesophagus became more inflamed causing swallowing difficulties for longer. 

I believe that dilatation can help stretch the oesophagus if scarring has narrowed it significantly, so it is worth asking your dad's oncologist about that.

I hope that helps a bit. It's good that you've reached out, there are lots of lovely people on this forum who all support one another.

Keep in touch,

Amanda

Hello Amanda, thanks so much for your reply. My dad’s diagnosis is exactly the same as yours. His treatment plan was the same too, except he had to stop the tablets about halfway through as he was really struggling with the side effects. It’s wonderful to hear that you have slowly been able to eat again. I think part of the trouble for my dad is the excessive amount of saliva he has, which also makes it difficult. I really hope his treatment has helped as it has been so hard watching him go through it. Thanks again for sharing your story with me.