I was diagnosed with tongue cancer Feb 2023, I had 6 weeks of radiotheraphy 5 days a week and 2 high doses of chemo. Was given all clear in September 2023. I had another scan in March 2024 clear. In October 2024 I felt another lump on my tongue went to see oncologist who felt my neck no lumps, put camera up my nose all clear but sent me for MRI scan anyway.
Relieved a phone call from him two weeks later scan showed abnormalities so had another biopsy and was put a sleep. Results showed cancer had returned in same area.
Option was sugury to remove half my tongue or immunotherapy. I didn't want the surgury, spoke to my cancer nurse who advised me to go for surgury as immunotherapy would only give me a couple of years to live so I felt I had no choice but to go for sugury.
Surgury booked for 2nd Dec 24, to remove half my tongue and take a graft from my arm to replace part of tongue he was removing, told me operation would take 9 hours.
I went down for surgury, when I woke up my oncologist was sat on one side cancer nurse on the other. He explained that he had put in the Tracheostomy but stopped operation half way through as tumour had slightley gone over to left side which meant he would have needed to remove all my tongue and voice box. I couldn't take it in as I had only just come around.
My cancer nurse then said I should revalue my life and finish work and spent time with my family which I thought was not right to say at this stage. I asked her 5 times if I was dying and she replied no.
Anyway I now have a different consultant and I have started immunotherapy. I feel something went wrong on their part and it was wrong for my cancer nurse to say that as she is now for immunotherapy and says it has excellent results. I am feeling angry and let down
Many apologies for moaning
Many apologies for moaning
Don’t apologise. We are here to listen and try to help.
It must have been a dreadful shock. The reality is that very often scans don’t show the full extent of disease and it’s only a visual exam that does. Immunotherapy can work really well in some people so I suspect pressing you for surgery in the first place was the reason behind the decision. A complete tumour free margin is better than immunotherapy.
It’s a pity this wasn’t explained in a kinder manner.
Nevertheless your new team seem to be on track so fingers crossed it works for you. There have been some good results.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Has he had clear scans, did the immunotherapy work
Hi Night.
Hazel has given you a link to Crofterlad
who you and I discussed earlier here
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
