Hello all

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Hey everybody - just wanted to say hi as another reticent member of the club. 

I went to the GP end of January with a lump on right side of my neck that didn’t clear after an ear infection. Urgent referral to ENT - which I managed to get the same week - where ultrasound and biopsy from neck lump confirmed cancer.

CT scan and further biopsy from back of throat have confirmed primary source as ‘where tonsil meets tongue’ not sure the medical name!

I have to say NHS (Glasgow) have been superb. Within space of 5 weeks I’ve had diagnosis, treatment is scheduled and I also had to have two teeth removed (one a wisdom tooth) quickly to ensure it heals before treatment starts. I’ve also had two MRI’s and two CT scans in that time. 

My treatment - 6 weeks of radiotherapy (mon-fri) with an overnight at the start for chemo and again in week 3 - is due to start on the 18th March and can’t lie. I’m super nervous about the side effects (I love food!)

Never thought this would be me, 53 never smoked and barely drink - but guess that’s HPV for you. 

Have already had to cancel holiday to Spain end of this month and not feeling confident that Florida and end of July will happen either (even if I can get travel insurance!)

But trying to stay positive and keep focussed on the horizon once I’m through treatment. 

  • Hi. My husband is the same age as you and also found a lump in his neck at the end of December which was diagnosed as HPV positive  with a primary tumour at base of his tongue. He too is very fit and doesn’t smoke or drink. He is on week one of 6 of chemoradiotherpy. You will find some fantastic advice and support on this forum. Today he is feeling a little grim from the Side effects of chemo yesterday but hoping for a better day tomorrow. He has a PEG feeding tube fitted on Friday.

  • wishing you all the very best for your treatment. I'm 53 too fit and healthy. Been told today I can go into a trial at Plymouth so I'm hoping I might avoid Radiotherampy/chemo for now and just do surgery as it's early stage.

  • Sending love and best wishes to your husband. 

    the feeding tube is the bit I feel like I’ve  had kinda conflicting information on. From it’s a small chance I might need one towards the end of treatment to there’s and 80% chance I’ll need one for a few months. 

    I’m able to swallow fine at the moment and would say it’s only a little uncomfortable rather than painful. 

    I guess we’ll see how it goes. 

  • Interesting. I was offered and agreed to join research - however it’s just data collection, not any change to treatment. 

    I think I’m stage T2 so not sure if that makes a difference 

    All the best Muscle

  • Hi, sorry to see you here. Similar experience to you...I had 35 RT sessions and it does leave your throat in a bad state. I chose to have the feeding tube, quite honestly I dont know how I would have managed without it towards the end of the RT. I hope the treatment goes well for you. One piece of advice its to keep slathering on the cream to the affected parts of your neck, it makes a big difference. Good luck.

  • Hi  

    welcome from me too. 
    its a challenging treatment but doable. I’m already five years clear. Time has flown. 
    Stay with us. Ask anything you want. There’s always somebody around to chat to. 

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

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  • Thank you all for the kind words and warm welcome Grinning

    question - I’ve been given a fairly extensive regime or jaw and swallowing exercises to follow pre and during treatment to try and mitigate trismus (spelling?) and give me best chance of keeping eating. Anyone had the same or had any issues with trismus (unable to open jaw/mouth properly)?

  • Anyone had the same or had any issues with trismus (unable to open jaw/mouth properly)?

    No despite feeding by tube for 8 weeks because I did those exercises religiously and still do five years later. 
    Honestly they really do work. 

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge
  • Hi I’m  iver 5.5 years post treatment. HPV is a good indicator for complete response so hold in to that. I travelled to Spain 8 weeks post treatment , so never say never. Ok insurance could be difficult for the states so soon after treatment has finished. 
    welcome to the club none of us wanted to join. 
    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • When you say cream are we talking moisturiser?