Newly diagnosed non HPV tongue cancer

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Hi, it's my turn to join the group that no one really wants to join.

I'd been having tongue problems since last autumn, my GP first suggested thrush, the treatment didn't help.  My second visit, she prescribed a cortisone treatment, again with no improvement.  Then came a dentist visit, he was not overly concerned, said it looked as if I may have been biting my tongue, so filed down a molar.  Still no improvement, so back to my GP for a referral to an ENT specialist, who said he thought it looked mechanical, and prescribed another cortisone treatment, and to came back in two weeks for a biopsy.  I had the biopsy last week (a freaking disaster, it took him three goes to get a large enough sample). The hospital phoned me a few days later with an appointment to see a surgeon, and receive my results.  I was not expecting good news at this point.

Today, I saw the surgeon and had my results, non HPV carcinoma, but no mention of SCC or not.  He did say that it would require surgery.  So I now have an appointment at a specialist cancer centre, for scans, endoscopy, and further consultation.  This is all happening in France, as that is where I have lived for the past 20 years.

I'm not too worried about the surgery, even though it may be long and difficult, and will suffer the chemo if necessary.  What scares me is the radiotherapy, or rather the after effects of it.  If there is any way of avoiding it, or trialling treatments using less of it, I will jump at them.

This isn't my first rodeo, I was treated for breast cancer 15 years ago, all good now. Really, really not happy to have it rear its ugly head again now though.

  • Today, I saw the surgeon and had my results, non HPV carcinoma, but no mention of SCC or not. 

    Sorry to read you’ve had this result. The carcinoma with be squamous cell as that is the type of cell that lines the mouth. 
    Not everybody gets RT. If surgical margins are clear and there is no nodal spread on PET or neck dissection then you can avoid it. 
    There is a good group to join if you are younger than 60. It’s called young tongues and has a very active social media group. 

    https://www.youngtonguesglobal.com/

    There are lots of people there with a tongue cancer like yours. 

    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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