tongue cancer diagnosis

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Good morning everyone i was diagnosed with base of tongue cancer yesterday,he said most likely caused by a virus it has taken me a while to get to this point after going to dr's then Pharmacist then sent back to dr then sent to the dentist then phoning the hospital myself to ask why ive not heard anything.

i am not getting an operation but it will be treated with Chemo and Radiotherapy and i am getting a tube put in my stomach for protein drinks etc.i have been warned it will be quite a journey and will be brutal,i will be going next week to see another dr and then the day after to get a pet scan.The hospital is an hours drive there and an hour back each time so i know it will be daunting with all the travelling. My actual Chemo and radiotherapy will not begin till 6 weeks down the line,seems a long time.

I am quite calm and i will accept all the help i can get as i want to live Slight smile

  • Morning susie. 
    I am Dani and I hang out in the head and neck cancer forum. Click the link and join us

    https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum

    I too had base of tongue cancer treated with radiotherapy. I avoided chemo as I had no nodal spread. 
    You're right, it’s a difficult treatment but doable. 
    I am six plus years clear and living really well. 

    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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  • thankyou Dani i will certainly have a look at all of this :) ps excellent ,im so pleased for you :) Susan

  • I wish you all the strength & luck with your treatment.

    I have just had an op & Radiotherapy for breast cancer but had problems with my mouth & base of tongue for a few years. An ENT & salivary gland specialist did MRI’s & USS & said nothing wrong but I’ve now had a sore throat, mouth & tongue again for a couple of months & it worries me.

  •   

    Do you suffer from reflux at all? 

    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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  • Yes I do but on Esomeprazole.ENT Consultant said my throat is pristine but my mouth is the sorest it’s ever been, it stings even at rest but I’m worried the acid has burnt up into my right ear canal. I also have a bruised feeling in the ligaments in the side of my neck & my jaw.

  • I am on Lansoprazole for reflux too and had one really bad flare with symptoms like yours. I arranged a private gastroenterology appointment as my GP was dismissive of my symptoms. It turned out I have a sliding hiatus hernia. That totally explained the flare and with slight adjustments to my eating habits I am as good as ever

    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
  •  Thankyou, that’s good to hear.  I have a small aliasing hiatus hernia. Can I ask what adjustments you made to your diet. I don’t drink alcohol & I don’t  eat spicy or rich food, Not sure what else I can cut out.

  • Not so much what I eat but smaller meals, no food four hours before bed and make a list of trigger foods. Oh, and keep thin and fit. 

    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
  • Thank you. I saw my gp Thursday, he said nothing looked untoward & told me to increase my PPI from 1 to 4 per day. He has done ENT 2 week referral but they have a quick look & discharge me. I have TMJ of my jaw on the right & it makes my jaw, ear canal & base of my tongue very sore & acid always comes up there as though there is a gap. They say my salivary gland is fine but it’s been very painful for a long time & it’s more comfy to swallow if I support it. I paid for an initial consultation with a Head & neck cancer & salivary gland Consultant in 2019  who initially said he thought my neck ligaments were calcified & was going to inject with steroids but changed his mind, he said my throat was pristine which is odd when I have had acid burn my gums numerous times, but it feels like it burns at the right base of my tongue, salivary gland & my ear canal but I can’t get anyone to believe me. I don’t know what else to do.

    i have dry eyes & lack of saliva but gp just says it’s Burning Mouth Syndrome. I use eye drops, night gel, saliva spray & have had a really bad week with all my mouth & tongue stinging severely. My mouth has no moisture every morning.
    Private Consultant decided I had glossopharyngeal neuralgia. If this was the case, my Difflam spray wouldn’t heal it like it has. 

  • Private Consultant decided I had glossopharyngeal neuralgia. If this was the case, my Difflam spray wouldn’t heal it like it has. 

    Maybe the neuralgia is periodic and it just seems like the difflam helps? Maybe a second opinion and request an MRI to get to the root cause? Sorry you feel so bad. It sounds like an awful thing to have to deal with. I hope you can find a way out

    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