Base of tongue cancer spread to epiglottis and tonsil

Hi Catx - Sorry you find yourself here with your diagnosis , but it's a great group. I don't have the same diagnosis (left tonsil HPV+) but there are people on this group that will have similar journeys to you and I'm sure you'll get lots of support in this community!

HPV+ cancer responds very well to RT I've been assured. I'm starting chemoradiation treatment June 20 (6 weeks RT + 2x cisplatin, on day 1 and day 21). I'm not claustrophobic so MRI was tolerable, but I've heard other say you can request sedation meds if needed. I'm going to get my mask made on Wednesday and have been advised to ask for eye holes so you can watch what's going on, can be quite interesting the first few sessions, until you just get used to it. Or you can ask them to play music and just close your eyes I believe.

It's all very new to me still - tonsillectomy and biopsy May 5 and diagnosed in my follow-up consultation - things can happen quite quickly in the planning stages, but it is the not knowing and waiting for scan results that is the worst! But with so many appointments, scans, calls etc it is hard not to feel frazzled! I'm just itching to start now - because everyone with experience on here says then it all just clicks and you fall into the routine.

Keep us updated and come back with questions, fears, rants .... whatever, we are all here for each other.

Helen x

Hi Catx welcome from me to our small community group. Sorry you’ve found yourself on here. Yiu can ask for sedation for the mri scans. Radiotherapy you aren’t  in the same type of tunnel so rest assured on that. The longest you are in is around 12 mjns i visualised bike rides favourite walks  and prior to treatment I used to practise lying on bed with timer on controlling my breathing and relaxing. As for the mask there’s a link to my cancer centre Leeds with a video on how mssk is made. All the staff are there to help don’t be afraid. Once everythjng gets started it falls into  place. 
Sorry you’ve had a bad experience so far. I am almost 4 years post radiotherapy for tonsil cancer with several affected lymph nodes happily living my life any questions ask ys keep off dr google Remember h p v driven tumours respond very well to radiotherapy. 
You aren’t a wimp we’ve all been in your position  we will all help if we can  

Ask for eyehole s to be cut into the mask it does help  

https://www.youtube.com/watch?v=zLF1o4BwbQs

Hazel x

Hi Catx and welcome from me.  I too had my tongue surgery abandoned but for different reasons.  You are only a few days past surgery so you should find the pain diminishing significantly by around day 10.  Personally I found the 3 surgeries on my tongue easy to recover from, unlike tonsil surgery!  I did not go onto radiotherapy, but others will give you great advice on that aspect.

Thank you so much for getting in touch. 

Thank you for your kind words. I will take your advice! I wish you all the best too. 

Thank you very much. I will look at your link now and your blog too. Will keep in touch.