Nerve damage

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I had tonsil T2 NO MO cancer in 2007 and have now got nerve problems. It has come out 20 years nearly after my treatment. I am having terrible trouble and finding it hard to cope. I have constant pain and burning  in my arms and legs, no feeling in 1/4 of my face and my tongue isn’t working correctly. This has all come on in 2 years ( 18 years post my radiotherapy and cetuximab treatment. I really am struggling to cope. Have you got anyone else who has ended up like this and any advice what I can do 

I am struggling to eat and talk and the nerve pain is spreading all over my body? 

  • Hello Devon2

    My Name is George, and I am one of the Cancer Information Nurse Specialists here on the Macmillan Support Line. I am so sorry to read of the symptoms you are experiencing so long after your tonsil cancer in 2007. I can only imagine how all this is affecting you at this time. We do not have access to personal NHS records and can only give general information and support based on your information.

    We are unable to assess health conditions on this platform. Any new, continuing, or worsening symptom must be reported to your GP as soon as possible so this can be investigated. There can be many different reasons and causes for such symptoms. If these symptoms worsen or become severe, you may need to contact 111 or 999 for a more urgent assessment.

    Nerve problems from radiotherapy and chemotherapy can be quite common, which normally improve over the months following the end of the treatment. However, lasting nerve damage is possible, and in some, this can become worse over time. It's important you are medically assessed as there can be many causes for these worsening symptoms.

    After an urgent assessment of your symptoms, you can discuss a referral with your GP to the late effects service in your area. Most large regional hospitals have a late effects clinic for people who have symptoms and side effects from Cancer treatment they had in the past. You also may benefit from a pain clinic and speech and language referral to help address the problems and difficulties this is causing with your eating and talking. More information can be found on the UK Late Effects service website, which you may find helpful.

    I hope this information is helpful. If you have any further questions, please get in touch by email, webchat or phone. You can call us free from landlines and from most mobile phone networks on 0808 808 00 00, 7 days a week, 8am – 8pm.

     

    Take care and Kind Regards

    George

    Cancer Information Nurse Specialist

    Ref GHi/JF