Tongue cancer

Hi Mungo1963 and welcome to the forum.

I was diagnosed with oropharyngeal cancer,  base of tongue, in May 2018.  I had robotic surgery to remove the tumour plus a neck dissection the following month.

There are numerous people on the forum who have had tumours removed from other areas of their tongue.  Whereabouts is yours located?

It's perfectly natural to be scared of your upcoming treatment but please take comfort in the fact that lots of us have been through similar and we're still here to tell the tale and support others.

Any questions just ask away and someone will reply - lots of support here for you.

Linda x

Hi Mungo1963

Hopefully this helps reassure you that it is not as bad as you may think.  Whatever you do not DO NOT Google anything.  You see the worst outcomes rather than the realistic ones!

I've had 2 neck dissections and 2 goes at my tongue (biopsies) and tonsils removal.  Currently awaiting a date for surgery on my tongue to remove the primary.

I think we are all concerned about the treatment and the waiting bit is especially worrying as your mind can run riot.

The tongue surgery at the biopsy sites healed really well and quickly.  I am assured that when they remove the primary (which is quite small) I should have a recovery timeframe of 2 weeks to a month to fully recover.  Experience tells me that the pain goes in 10 - 12 days.

The may place an NG tube for the upcoming tongue surgery but I am determined to try not to use it.  I learnt what worked for me food wise with the tonsil ops and I am going to try going down a similar route this time.

The neck dissections I found easy and I had 2 great surgeons - one for each dissection.  The scarring is minimal and they hid the cut in a fold in my neck so it really does not show.  Post operatively I had a single night in hospital each time - just to be in the right place in case of a serious bleed.  I had absolutely no problems.

I found that the muscles in my neck were weak after the op and I had to support my head when I sat up etc. for the first week or so.  I got a wedge pillow from John Lewis to support me sleeping in a sitting position that I found more comfortable.

Overall the neck healed quickly and I really did not notice it.  Stitches one time and staples the other.  Both came out with minimal discomfort.

Longer term I have some slight stiffness in my neck and swallowing is "different".  Saliva has been reduced with the glands they took out, but water in copious quantities works for a dry mouth.  It does not really affect my eating.  I also have some difficulty with my right shoulder.  Again this is not life limiting and keeping up with good physio after the op helps immensely - I sail a yacht and it does not affect that so hopefully that puts some context around this.  My chest is also tender from where the surface nerves were cut in the operation.  Again not an issue I worry about.

There is the potential for other side effects and speak to your clinical team.  I think they are rare, but they can be more of a problem - a lopsided smile for example.

Whatever you do keep up with the pain meds and listen to the advice given, both here and at the hospital.  Make friends with your GP before the operation as they may be quite useful in managing you in post operative care.

Slightly long I am afraid...  If You need more information feel free to ask, either on here or message me though the "system" if you don't want an open discussion.  I hope all goes well on Tuesday.

Welcome to our little community

Can’t  add much to Linda’s or Peter’s excellent comprehensive post except good luck don’t worry and let us know how you get on. 
Come back any time you need a little support. There’s always somebody around. 
Best wishes

Hi the tumour is under my tongue at the back/side. Thanks for your response x

Just wanted to wish you all the best for Tuesday Mungo.

Linda x