making a choice

I recently had surgery to remove a tumor on my tonsil [PATHOS TRIAL]and a neck disection to remove lymph nodes from my  neck. A margin of healthy tissue was taken but this was half a mil short of the requirment for the Pathos trial ,and I was removed from the trial.The histology report showes no cancer in the lymph nodes or left tonsil . The tumor in the tonsil [p16 positive, squamous cell cacinoma t3 no mo was completey removed ,and no sighns of caancer in the neck [0/29 Nodes involved].I have had considerable pain and side effects following surgery, particularly swollowing and ear pain.I have now been offered chemo and radio therapy 30 sessins over 6 weeks. My dilema is whether to wait for further treatment until I feel fit again ,accept it now and just get on with it or have no trestment. I am a self empolyed gardener and i know that treatment and its side effects are likly to impacy serriosly on my income. I live 1 half hours from the hospital , my wife would need to take me , and I am worried about the strain of this on her as well as having to care for me post treatment.I have looked at several blogs but cannot find anyone who has had a similar experience. I feel that I was told I was cancer free but  to be sure I must have further treatment and suffer similar side effects from which I am just gettin over.

  • Hello and thanks for posting.

    I'm sorry you have been through all this and now have decisions to make.

    It would be best, most importantly, to discuss this all with your doctor and specialist nurse (CNS). They know you and your situation and can advise on things such as when treatments if you were to have them, would start. This timeframe could make a difference in how you are feeling mentally and physically. Sometimes the doctors have an idea of how they expect your cancer to respond to treatments. It may be that they feel you will have an improved overall outcome if you go ahead now with treatment, as opposed to waiting, but this is all information that only they as your care team will know.

    Writing a post and placing it on our 'living with cancer' or 'newly diagnosed' sections of our forum may get some other people's experiences of this.

    Several charities support patients with head and neck cancers. The Swallows, Head and Neck Cancer Foundation, and Head And Neck Cancer UK, are all UK-based charities that can provide information and support if useful.

    Do discuss your ongoing pain with your team. There is some information from our pages on possible problems after mouth cancer surgery, and this is our section on chemoradiotherapy treatments if helpful.

    This is a link to Macmillan's page on financial support for those with cancer. They also have a benefits advice line that you can access by calling their helpline.

    Unfortunately, it is your decision to make, but ensuring you have all the right information to make the best-informed choice about your care is essential. If you want to talk things through with one of the nurses on our helpline the number to call is Freephone 0808 800 4040. The lines are open from 9am till 5pm, Monday to Friday.

    Take care,

    Sarah.