Hello All,

My sister recently had a partial glossectomy to remove a T3 tumour on the underside of her tongue, plus a selective neck dissection. Pathology reports showed that one of her lymph nodes was cancerous and that, although the full tumour was removed succesfully, in one spot there was a very close margin, apparently increasing the chance that some cancerous cells were left behind. Her consultant has recommended a course of radiotherapy for best chances of survival. My sister is willing to undergo the short term side affects of the treatment, and well understands what these might likely be. Of greater concern to her are the long-term, permanent side-effects of radiotherapy treatment (particularly damage to the saliva glands which she understands can affect speech, amongst other things, which is already comprimised in her case due to the surgery she has undergone). She is focused on quality of life, rather than living at any cost. I am trying to support her and help her make an informed decision. If she doesn't have radiotherapy the site will be monitored at frequent intervals, with scans I think. She needs to decide ths in the next few days. Whilst I realise that no two cases are the same, and that much is unknown, I would be very grateful to hear from anyone who has had similar surgery and then undergone radiotherapy, about their experiences and any long term side affects etc...

Many thanks.

Hello Seekingadvice

The side effects of radiotherapy effects are survivable. The newer radiotherapy machines and techniques like IMRT can reduce the side effects. Ask your sister to go for the treatment if that is what her oncologist advises (ask the oncologist: "what would you do if it was you?").

Best wishes
Vinod

Hi I had T2 tonsil with 2 lymph nodes removed by modified radical neck discection, lip split and madubolotomy in December 09 followed by 30 fractions radiotherapy which finished late May this year.

Yes your sister could have side effects from the radiotherapy, taste could be affected to the degree that things will taste either bland to horrible, saliva could dry up and/or become very thick, skin will become sore over the weeks of treatment and the inside of the mouth will become very tender, eating could become difficult, thrush could follow, fatigue, nausea and no end of other stuff.

The Oncologist will warn you of all these things and advise on various ways to help ease the effects. sounds horrible and yes it is but there is an end to it and quality of life does return. 5 months after treatment my taste is coming back, I am eating solid food again (had chilli and jacket potato for dinner tonight!)scars have healed, the saliva, or lack of it, is still an issue but I manage it by never being far from a bottle of Evian.

Best wishes to your sister, I do not expect things being as they were but I am still enjoying life.

Hi
I had surgery in December last year and followed this mid feb with 33 radiotherapy sessions and 5 chemos. The radiotherapy was far worse than the surgery and the side effects were not nice at all, but I did not really feel there was a choice. The consultant advising 'we will throw everything at it' I finished my treatment on 31 March and I cant remember much about April apart from being sick a lot and sleeping. Mid May I started feeling better and although it was difficult I started eating again, Complan soup being a favourite. I wont say recovery has been easy but now I do feel a lot better. I still get tired and yes my throat is dry but I always keep a drink in my bag whenever I go anywhere. My throat still gets sore, but I look back to how much it has improved since April and there is a huge improvement. I can eat and drink most things now, although sometimes I need to have a drink with my food if its a little on the dry side. I still have a stiff neck but that can be overcome by moving in a different way.
I am hoping to return to work in September, reduced hours for the first six months, then reviewing after that.
My quality of life is not the same as it was before but its close, you just have to make some adjustments.
The question Dr Joshi suggested asking 'what would you do' is one I have always used when speaking to Drs and consultants.
Good luck to your sister like lots of us on this forum she will get through it, she will just need your love and support along the way.

4 years on I'm pleased to say that radiotherapy is a fairly distant memory. Effects now? I've lost one saliva gland, but the other one seems to make up for it to a significant extent. I certainly eat more slowly than I used to, but not to a ridiculous degree. I can, and do, eat almost any foods.

Hope this helps.

Hey 200 minutes!

Four years!? Long distance high five!

Hi Julia

Thanks for the LDH5!

Remind me - how many years is it for you now?

Dave

Hi Dave

Five and a half years on August 4. I was hoping that, by now, I'd be seeing my doctor annually. My last appointment was in March and I'm due back on September 9.

I think he's rather proud of Flappy (my flap) because he takes pictures nearly every time I go in. I'm followed at the University of Michigan Medical Center (biggest and best teaching hospital in the state!), and my doctor is also a professor at the med school. He said that he's got students who want to do an operation like mine. Honestly, I hope they never get the chance.

Sorry--I tend to perseverate when I talk about this.

Julia

The effects of radiation tx vary from patient to patient. For me it was 18 months before I could stand the taste of anything other than Ensure+ and fruit smoothies but now I eat fairly normally but slower. The dry mouth is tolerable with the help of certain products. Here in the States we have Biotene toothepaste, mouthwash and oral gel, all to relieve dry mouth. I usually wake up maybe twice a night needing a drink of water and some Biotene gel. It' really not much more than a nuisance now.