Tongue Cancer

Hi all,

So...I have been diagnosed with tongue cancer last Thursday. Everything is happening so fast and my operation is scheduled for this Friday. It all started in May with what I thought was a chipped tooth and one slightly sore tongue. It turns out it wasn't the tooth! I have a stage 2 cancer, the tumour is on the left side of my tongue, roughly 2cm long and 1 cm deep. They have explained the procedure: removal of the tumour, tongue reconstruction ( using the muscle/skin from my arm), creating free flap (transplanting the vein from my arm into my neck to ensure that the new part of my tongue has blood supply) and neck dissection ( lymph nodes removal).  It all just sounds so overwhelming and complicated. Yesterday I have had a meeting with my Macmillan nurse, Speech and Language Therapist and Dietician and feel much better now as they have answered all of my questions and trust me, there were loads.  It is also very reassuring that the hospital had made sure that I meet all the doctors and nurses that will be involved during the operation and with my aftercare. All the staff have been absolutely amazing! 

Now I have been told to fatten up and to eat as much as I can as before Friday. Easier said then done as my stomach is constantly tied in knots from my nerves. Also my tongue is still very sore from the biopsy. 

Sorry about such a long rumble! Has anyone experienced similar procedures? Any advice? I am very anxious about the fact that I will be fitted with the nose tube, what with swollen tongue, stitches on my neck, etc. I am worried about being able to breath freely, especially whilst coming out of the anaesthetic. I can see myself ending with a panic attack and not being able to breath.  

Any advice/tips very much appreciated

  • Hello Peanutbutter,

    I just wanted to come and say hello, welcome you to our friendly community and wish you the best of luck for your surgery tomorrow. It is incredible how fast it has all been for you and that you are already having surgery tomorrow. You have joined the right forum to meet others who have had this type of surgery before as we have had many on our site who have come and shared their tongue surgery experience.

    If you type 'tongue cancer' via our 'search forum tool' at the top you will be able to see all the search results and pick any tongue cancer thread that will be relevant to you and respond to any you wish to engage with. I've done a little search myself for you and found for example this thread by [@Sarahhug]‍ who mentioned she had an operation to rebuild her tongue or more recently [@kirkc99]‍ and you might be interested in having a read of this long tongue cancer thread. You will learn a lot there I am sure from our members' operative and post operative experiences.

    Our website also have very detailed information on tongue cancer which you can find here and you can also read more about tongue cancer treatment and surgery on this page to help you prepare a little for the operation.

    If you live in the UK, you're also welcome to ring our nurses if you have any questions ahead or after your surgery. Their number is free and you can call them on 0808 800 4040 Monday to Friday from 9am to 5pm.

    Wishing you the best of luck for tomorrow. I hope it all goes well and I wish you a very good recovery.

    Best wishes,

    Lucie, Cancer Chat Moderator

  • hi peanut butter, 

    i wanted to message you as I am having the exact same operation as you had on Monday. I just want to know how you are doing? I am very anxious. I really hope it went well for you, and your recovering really well x