Subtotal glossectomy followed by radiotherapy

Hello Peggy. So sorry to see you here in our community but we will try to help where we can. I have a friend who has had a similar experience and I’ve asked her if she can pop in here with some advice  

I had radiotherapy for tongue cancer but no surgery  The treatment does produce severe side effects that’s true but they are manageable to a tolerant level with support and analgesia. Nobody has all of them. It is indeed hard but the alternative is worse 

It sounds as if you are there with her to help her through which is a godsend. 
ive sent you a friend request because I have a couple of other contacts to let you have. If you accept I can message them to you 

Hi Peggy sorry  you’ve found yourself on here but welcome to our small community group. I am almost 3 years post radiotherapy for tonsil cancer with several affected lymph nodes.like Dani I know a couple who have had same as your mum. If you don’t mind how old is mum ? We know a lady who is 76 and has successfully completed tongue glossectomy and 30 sessions of radiotherapy. We don’t get all the side effects the consultant s are obligated to tell you about them. It’s not a walk in the park but it’s doable and certainly better than the alternative.

Hazel x 

Hi Peggy

i had a hemiglossectomy & neck dissection last October followed by Radiotherapy over Christmas (60gy over 30 sessions /fractions).

My lymph nodes were clear and my margins good BUT there was other histology that was less encouraging.

Fortunately, I haven’t needed a PEG or ng tube since leaving hospital for the major surgery but I have had issues with the neck wound getting infected (ongoing!). Do try and make sure that it is FULLY resolved before the Radiotherapy starts.

I didn’t have thick phlegm, but at this stage had LOTS of salive - sleeping with a tissue in the corner of my mouth!

i’d suggest she keeps as hydrated as possible and perhaps a humidifier - especially at her bedside - might help.

If she’s not been given swallowing exercises, then I’d encourage her to ask for them (or look them up on the internet). 

Radiotherapy? Yes, it’s shit. BUT it is doable with the right support and attitude. It’s a case of enduring and emerging the other side. Her team will have seen it all before but there are certainly tips to coping as you move through. 

Do shout out if you want any other info

Stephanie

55, T3N0M0 NW London. 

Hi Dani,

Thanks for sharing your experience and sorry to hear you had to go through radiotherapy. It is reassuring to think it’s unlikely to experience all the side effects. Thanks for the friend request and the offer- really appreciate it 

Thanks very much for your response Hazel, my mum is 73. Sorry to hear about your experience- I hope your doing well? Wow what a trooper that lady is, do you know if she can eat and drink using her mouth after the treatment? I think for mum that is the main goal, Peggy x

Thanks Stephanie, really helpful and sorry to hear about your situation- how are you getting along now?

Thanks for the tip about the infection, will certainly keep my eye on it.

Using the PEG to keep her hydrated at home is much easier, we have a humidifier and a nebuliser to try and help. Did you experience any dry mouth during your treatment?

Thanks again, Peggy

Yes, I can. I want to the Lake District a couple of weeks ago. Full Michelin Star Tasting menu. I do still have limitations however!

If you accept the request I can put you I rich with Laura who lost  7/8 of her tongue but can eat and speak  intelligibly. 

Hi Peggy yes she can and a few weeks ago when she got the all clear she celebrated with a glass of champagne. Our other friend. panch as she said she’s just done a holiday in the lakes including a full tasting menu. 
St first it’s all so over whelming you don’t think straight this is what you snd your mum will be feeling. 
As for me I’m doing really well we’re on holiday in north Wales planning to cycle snd do a mountain so life is goid. Still get dry mouth from time to time but sugar free gum sorts me out.  
Hazel x