I am 5 years since initial diagnosis, will have finished treatment 5 years ago May 2020, 30 days radiotherapy and 3-4 dosage of chemo. I was doing ok apart from usual problems re dry mouth and very dry overnight etc....however for last 4- 6 weeks have had increasing problems eating, I have told my head neck clinic check up people on last 2 occasions but they just seem to say scope shows no cancer signs so ok next please, Southampton are not the greatest at follow up care, but thats another story. I got really concerned and phoned the speech therapist who was very helpful and arranged a Videofluoroscopy which showed swelling at back of throat and my obvious problems swallowing. They told me they would pass to ENT for follow up check up at head and neck clinic as soon as possible. I had also gone to my GP and he sent me for a Gastroscopy, which proved to be a very painfull experience due to swelling and sore throat, she discovered acid reflux, Bartletts, and swelling in my oesophagus, oesophagitis. Again she said she would write to Head and Neck and see what they suggest.
Well on attending my appointment at Head and Neck appointment it was aparrent no had spoken to anyone and they were just ready to do an normal scope check, I had to say' you don't know why I am back here do you' I then ran through everything and handed over copies of all the reports as they were completely unaware of them. End result I was scoped again and have swelling /irregular lump?? so they want to biopsy. So I am still in discomfort, pain, struggling to eat and not sure what I should be doing whilst I await biopsy then await results.
The speech therapy people are being great but I would welcome some suggestions to what is good to eat, has to be very gloopy, to help maintain body weight, I have protein drinks my GP gave me and I am taking soups with full cream added.
Would be good to hear if anyone has had these problems so long out of treatment
I've not had what you describe blair but I do still struggle to eat five and a half years post treatment. Various reasons in my case, I still struggle to swallow at times due to damage caused by RT, taste is still not "right" with most things, I almost never feel hungry so have to force myself to eat almost as if it were medication. I can at times "enjoy" a smallish meal but that's more to do with my eyes and therefore my brain telling me it's a nice meal rather than proper gastronomic enjoyment.
None of that though addresses your current situation I'm afraid but I didn't want to leave you unanswered. My diet is topped up with complans which I get on prescription still so they may help you in the short term. Everything crossed for you that the biopsy shows it's nothing to worry about and they can get you sorted asap!
Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.
Hello blair55, wow it seems as if you have had a bit of a rough few weeks trying to get some answers, please ask for stronger painkillers as this will help very much indeed. The discomfort will not ease until they decide what they are going to do once they get the results of the biopsy and scans if needed. As MikeO said drinking supplement drinks like complan , ensure, etc are a great help and on prescription, i like you also had soup with cream, also dairy desserts come in handy and have cream on them in many cases. Good luck with the results etc. All the best.
Chris .
Its sometimes not easy but its worth it !
