Today was the day I'd been looking forward to (and dreading in equal measure !) with the results of my CT scan.
On the whole it went really well. The oncologist is delighted with how my body has responded to the treatment. She talked me through the before and after scans, showing me where the cancer was on my tonsil and neck. Happy to say the cancer is now completely away from my tonsil. However, whilst it's nearly away it's still there in my neck. She did say she wasn't overly surprised by this because the neck tumour was fairly large at 4.5cm.
Upshot is I've been referred for a PET scan to see if those cells are still active. Her feeling is that they are not. If they are then she talked about an operation to remove some neck glands. However, she seems really confident that the scan should show no further action will be required and that the radiation in me will still continue to work.
Only thing that's really disappointed me is they have insisted I keep the RIG in until I get a clear PET scan. Don't get me wrong I can totally understand why, as it's not a great operation to put them in. Had just hoped with going on our first holiday for 5 years in a couple of weeks that was one piece of baggage I wouldn't need to carry with me.
Overall happy, perhaps a bit down. But certainly not out ! :)
Hi well done for getting through your treatment!! I had same tonsil and node same treatment chemo and radiotherapy, not sure if it’s the same but I was terrified that my lump was still there after treatment, I too had a pet scan, my consultant kept saying they’re dead cells left behind and he was right I didn’t glow at all on my scan. Really hope you get the same news, it’s so scary I know but try to be reassured this could be cells left behind! Good luck with the scan, I think it’s a natural feeling for all of us to fear the cancer coming back, all the best x
Hi, I had very similar experience. Mine was 4.2cm though think it was bigger just before I started treatment. I had 3 MRIs and a PET scan and still 'cells' were present where the lump was. Drs felt it was a sac of dead or dying cells but they wanted to keep scanning to be sure. Other than that my recovery was going really well so they kept telling me they weren't worried but I was a bit down about there still being something there! Those multiple scans were over a period of about 8 months when they finally said they were satisfied and that no further imaging would be required. I managed to get rid of my PEG a couple of months after treatment (despite not having the treatment scan). I didn't end up using it so my team were happy for me to have it removed.
Well done for getting through the treatment. Good luck with the PET scan. Let us know how you get on.
Lisa x
Thanks everybody.
The holiday was fantastic and just what was needed after the difficult last few months. Coped with the all-inclusive food absolutely fine (although I missed my bread rolls at breakfast !) and it was great to enjoy a good few beers in the sun. Best part was seeing my wife so relaxed after everything she's been through with me this year.
They fitted me in for the PET on the 11th October which was great and the results appointment is in for the 5th November. The imager reckoned they'd have them within a few days so was surprised by the gap but he said to take it as a positive and that it might mean they are not hugely concerned.
Of course now I'm home the anxiety is through the roof again and tempting to phone to see if results are available but not sure they would even give them.
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