Diagnosis

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Just heard from Head and Neck Team after my MRI and Pet scan last week. They want me to go in next week to have my tonsils removed and base of tongue biopsy. I am really scared now, does that mean I am going to loose my tongue. Nurse wasn’t very clear 

  • No Debbie. They are simply going to biopsy the back of your tongue. Your tonsils are lymph nodes. There are also tiny  lymph nodes at the back of your tongue so that is what they are checking. Try not to worry. I had a T2 tumour arising from those little nodes and they fixed me with radiotherapy. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Thank you Dan, I feel ashamed to say I burst into tears, especially when other people suffer so much more. I wasn’t told much by the nurse, so I am assuming the primary site is the tonsils. Everyone on here is wonderful, snd honestly cannot thank everyone enough

  • Sorry I meant to say Dani x

  • Hi Debbie, just to reassure you, I had tonsils out and base of tongue removed robotically at the end of march.  Had minimal pain and no problems, would never have known that the bit of tongue had gone! (My primary had not shown on scans, hence taking it all.)

  • Hi Juliesss

    It's a relief to speak to people who have gone through this. I was imagining my tongue being taken out, and never being able to talk or eat again. Which is pretty selfish when so many people are going through worse cases. 

    I know I keep repeating myself but I am grateful to you all x

  • you are most welcome.  I ate on the evening of the day of the surgery!!  Tried to poke the back of the tongue to check it had gone but was not possible Joy!  Did you say that they are not sure where the primary is?

  • The nurse didn’t say when she rang me, just that they are removing both tonsils snd doing a biopsy from the base of my tongue. I just assumed it was the tonsils, I’m assuming they will tell me more next week

  • Hi Debbie

    I also had a biopsy on the base of my tongue.  I was in and out the same day.

    Don't be ashamed.of bursting into tears.  It's all so new and the mind can conjure up all sorts.....

    Good.luck next week.

    Linda x

  • Thank you Linda. I appreciate your kind words x

  • Oh Debbie....of course you allowed to burst into tears. This is all so overwhelming and until you understand exactly what is going on and when everything is going to happen the uncertainty is killing. Other people's suffering is immaterial...just concentrate on yourself. Once your treatment plan is in place things become much easier. You have a goal and that is to get better

    I had a tongue biopsy and was in and out the same day. My tongue was a bit bruised each side where I presume the surgeon pulled it out........ouch! but apart from that Paracetamol fixed things for a few days.

    Having tonsils out is a bit more painful but I'm sure you'll get all the analgesia you need.

    Best of luck

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge