Hello everyone Im new here - base of tongue cancer

Hi Stephen. 
I had base of the tongue cancer and today is six years out of treatment. 
I didn’t have any teeth out. Extractions are recommended only if the jaw that holds them will get a lot of radiation and if they are likely to need extracting in years to come.They look particularly at your molars. You are going to get RT to both sides of your neck if your cancer is at the back of your tongue.  So if your roots are healthy you should be ok. 
The treatment is painful and lots of people can’t eat so it’s sensible to be a good weight to start with. 
My advice is if you are offered a PEG or RIG feeding tube take it. Most of us have high calorie meal replacement drinks to keep our energy up and stop weight loss so that we can cope with the treatment and make a good recovery 

Stay with us. You’ll have lots of questions and there is always an answer here. 

stephen l said:

p.s I feel lucky to have found this site as it seems any people have got through this. 

PS from me too. This cancer is very sensitive to radiation and cure rates are in excess of 90% so hold onto that 

Hi Dani,

Thank you so much for your feedback, and that great news to hear you are 6 years clear of cancer today - I am very happy for you.

yes I will ask about that as I don't weight much and now trying to eat more. 

stephen l said:

Thank you so much for your feedback, and that great news to hear you are 6 years clear of cancer today - I am very happy for you.

It was just to illustrate how beatable this disease is. 
Take care 

Hi Stephen 

I had Chemoradio for Tonsil cancer HPV16 plus in 2023, 3 molars extracted, lots of patients don't need any teeth extracted.....for various reasons ...

As for food? I put on a few pounds pre treatment by eating my favourite meals more frequently....I knew that I would probably be unable to handle them during the later stages of treatment... and during recovery.... but not everyone gets hit with all the harsh side effects...

I lost a few kilos during treatment and recovery but now back to a healthy BMI and enjoying my food.

Keep the forum updated with your progress 

Peter 

Thank you Peter, thats good to hear.

I will keep this updated 

Great to hear you've had a full recovery, it gives me hope. 

Hi:Stephen I’m over 6..5 years post chemo radiotherapy tonsil cancer with spread to lymph nodes HPV postive. I had no teeth out and have had no issues post treatment. I am lucky I’ve a fab nhs dentist and touch wood haven needed a filling or anythjng. We have to be scrupulous with our oral care after treatment due to,lack of saliva. Use duraphat toothpaste for life and have a fluoride varnish every 3 months  at dentist. 
Treatment has an excellent cure rate , I can’t lie treatments hard but worth it. 
No questions too silly to ask 

Hazel x

Hi Stephen 

I think I’m about two weeks ahead of you with exactly the same cancer.  Mine is stage 2 due to the size of the tumour, it has not gone into any nodes so luckily I’ll only be having radiotherapy, starting on the 28th.  My sister in law had throat cancer about 9 years ago and has passed on lots of information to me some of which I have now experienced.

The dentist thing should not be an issue if you’ve been having regular dental check ups.  What they’re looking for is anything that may become an issue in the future (my SIL had her wisdom teeth removed as part of her check up) as the mouth, especially the saliva glands can be damaged as a result of your treatment.  I sailed through mine - they did an x-Ray and everything was fine.  I do have a crown and a fixed retainer but they weren’t bothered about either.  

I had my RIG fitted first thing on Tuesday so I am now day 3 post surgery and below is my journey so far (bit windy I’m afraid but that’s me!)

Nearly fainted after the second flush (at the Guildford Nuffield they push water through the port twice at 2 hour intervals though I believe this may vary from hospital to hospital) as they tried to move me to a chair - boy did they move me fast back to the bed and onto oxygen.  Still managed to leave hospital that night (was NOT staying in and I might have massaged the truth about managing to fart so I could go home though lady like burps was in the bag).

I hadn’t realised how important it is to get rid of the wind both by farting and burping and to begin with I had terrible trapped wind which was more painful than the surgery site.  My pain has been managed to a large degree with voltarol suppositories and paracetamol as morphine et al do now work for me.  Even now everything is still deeply uncomfortable.  Walking round the ground floor of my house has really helped with this problem as the action of moving has been having a gently massaging affect on the trapped wind and my protesting abdomen.

I slept on a sofa for the first two nights and by mid way through day 2 realised that I did actually have core muscles which came as a shock as walking is about all I do for exercise.  I’m now struggling with over worked upper back muscles as I try to compensate for not being able to bend very much.  The pain relief is as much for the muscle pain as for anything else.

I’ve also got a weird pulsing feeling inside by the hole and am assuming this is somehow linked to the balloon in my tummy.  It has been occuring less and less and time has gone by but still happens whenever I flushed the tube, burp, move or eat

I have been having trouble sleeping so have been napping as needed (though one was 5 hours.)

i am still in a lot of pain so haven’t reduced the meds yet but am moving more freely now.

I now no longer cup the site when walking and have been concentrating on moving with as straight a back as possible.

I do worry about eating and stretching my stomach too much so have been eating smaller portions and nibbling more - I have been told not to lose too much weight before I start radiotherapy on my neck for a squamous cell carcinoma, stage 2 at the base of my neck (Larry the lump for short).

I see my journey as being like a flight.  Only that I am the only one with a tiny seat and almost no leg room.  There is a large, obnoxious child regularly kicking my chair.  The pilot and his team (radiologists etc) are expertly guiding me to our destination’s end, the cabin crew (nurses and other support staff) are there for my safety.  The chief purser heads up the team (oncologist) and keeps an overall eye on me as I have the worst seat on the plane.  What I have to remember is that the annoying child (who started kicking when I had my biopsy and then again when this RIG was fitted) will get fed up and stop for a while but will be literally kicking my butt out of frustration once we reach cruising height.  The journey is a means to an end.  The nurses and purser are there in times of trouble (don’t forget to use the call button!) and if I try to bail out the results won’t be pretty.  

I am not afraid of the pain - it is a known quantity but it is a means to an end but this RIG malarkey has been freaking me out a bit and I think it is this fear of the unknown that has made my symptoms feel worse as I overreact to every little thing.  I do need to remember that this small dangling thing may save my life.  My SIL ended up in hospital as she refused to use it appropriately and was starving herself.

And finally keep drinking,  regardless of how painful it is and whether you become completely reliant on your feeding tube or not, you MUST, MUST, MUST keep drinking (even if only a couple of sips an hour) it protects your mouth and reminds your body to swallow.  My SIL tells me iced water is the best as the cold acts as an anaesthetic and this simple action will really speed up recovery as well.

I hope your treatment goes well (mine is 30 zaps over 6 weeks) and that you have something fabulous to look forward to on the other side.  Mine is to go on the holiday that we’d booked for February but had to cancel.  Hubby and I have pencilled this goal in for September.

Hi Stephen.   I had tonsil cancer. On 7th RT now. I’ve always brushed my teeth 3 times a day and been to the dentist regularly. I’ve not had any extractions or work done. Just had the usual  fluoride varnish. 

thanks you all for replies. I am seeing my gp on weds and will get that tooth paste.

do the saliva glands go back to normal in time?

im not sure how it works on here - do I post a new message each time or follow this thread?