Tongue cancer

Hi RoxyToby and welcome. 
Tell us a bit more about you and your tongue. 
Then we know how to help you. 
I had tongue cancer but no surgery, just radiotherapy. Nearly 4 years clear 
Tips? For now do as your team tells you? 

Thank you

Hi Roxy Toby. Welcome from me my cancer was tonsil, let us have a bit more info then we can help. 
but tell your team any concerns they are a good port if call

Hazel 

Welcome from me. 

Many of us have had surgery for H&N cancer.  If you can tell us what the clinical plan is I'm sure that at least one of us can come up with some practical advice. 

In the meantime a) stay off Google as most of what is on there is out of date and will frighten you - surgery is not like that nowadays for most people b) take whatever painkillers are offered and take them by rote even if you think you are relatively pain free c) get in a good stock of laxative to counter the opioid painkiller's constipation effects d) try to exercise pre and post surgery and e) time is the great healer in all this as you will initially heal very quickly but then slow and steady progress over 18 months or so.

Hi Roxytoby and welcome.   I  was diagnosed with tongue cancer on 28.12 had a scan on 9.1 to see if the cancer is contained.   I  have an appointment with consultant on 20.01.  for results and hopefully a plan.  What has been your journey been so far?   

Hi initially told under tongue cancer to be removed, Inc some bottom teeth, surgery on neck skin flap to be taken from und e forarm, when another to replace that, may have some of tongue removed but will know more next week

Thanks for your reply. Every ones plan is different but the help and support on this forum is second to none.  Hope you get more answers at your next appointment.   

I had an operation to remove the primary cancer from my tongue on 12th Dec. It was a very small primary - in fact the planned operation was for a selective neck dissection to remove lymph nodes and teeth extraction ahead of radiotherapy - as they couldn’t find the primary. They found it just before the operation and removed it at the same time. A strip was taken off the left side of my tongue. No reconstruction of the tongue was necessary and because the margin around the primary was adequate no further intervention required for my mouth. I’m due to have radiotherapy combined with chemo for my neck starting 25th Jan.

My tongue wasn’t that painful after the op but it was very swollen and I could only manage soups and pureed food for the first two weeks or so. Now 5 weeks in I can eat most things although it’s still slow but I think that’s a combination of having teeth out as well. Speaking was also difficult immediately after the operation. I came home from hospital with a whole list of exercises from the speech therapist and they helped a lot.  It still doesn’t sound quite right to me but it’s not that noticeable to most people now. Tongue itself still feels a bit odd almost as though you’ve just scalded your tongue on a hot drink. Sense of taste ok but not yet the same as before. Early days and hoping that things keep on improving over the months. 

Every case will be different but hope this gives you some idea of what’s involved. Good luck!

Hi, I've been off the site for a while. I had same cancer and same treatment. I've just past 5 years. Any questions feel free to ask 

Hey Wendy. How lovely to hear from you again. Hope all is well with you.