Hi

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Just been diagnosed with base of tongue malignancy with bilateral neck spread and am waiting now for treatment to start any advice would be appreciated as I have no real idea on what to expect and I understand everybody is different  in how they react to radiotherapy and chemo but not knowing and waiting is a little frustrating in truth

  • Hi Pac

    Everyone does react differently, treatment is challenging, PEG feeding tube is a must for many, pain meds and anti-emetics are crucial, make sure you are well stocked, mask fitting can be difficult for some as can pre treatment dental work.

    Peter 

  • Hi Pac

    sorry you’ve joined the club mind if us wanted to join. Ask any questions in here were  all happy to help. I’m 6 years post chemo radiotherapy for job driven right tonsil with lymph node involvement. Treatment is hard rd over can be long but it’s doable. Feeding tube was my lifeline it enabled me to make a good recovery. Side effects you rarely get all of them the long lasting one for many us dry mouth . Blog below might help. 

    Adequate pain relief and hydration along with nutrition is vital. Also constipation needs keeping in top of along with oral healthcare. 

    hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi and welcome from me.  At this stage I would be planning for the praticalities of life - like how to get to and from treatment, what little extras may make a difference that the hospital may not supply (nebuliser etc).  I would be getting my head around the fact that this will probably take a year out of your life in return for a cure that gives you many more good years.  The recovery is long and if you are prepared for that then it is certainly easier mentally to cope.

    Don't be scared to ask for help - here or at the hospital.  Everyone wants the best for you at this really tough time in your life.

    Peter
    See my profile for more details of my convoluted journey
  • Hi  

    Welcome to our little community 

    everybody’s advice is good. 
    Are you having a neck dissection before chemoradiation? 

    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 Pa2007

    Awarm welcome to the group from me ,this lovely group will be with you every step of the way and someone is always willing to try and offer their support  which comes from lived personal experience and their own knowledge base.

    At this point I would stay off Google ,try and enjoy your favourite foods ,try to keep your anxious brain busy with other things (i know this is a challange)I watched endless amounts of films/boxsets on netflix /TV.

    Once treatment starts the fear and anxiety seem to lessen for most of us. The mask fitting for many is like warm towels being placed all over your face which are then quickly dried to shape the mask. Many of us ask for parts to be cut out (I had eyes/mouth) You can listen to your favourite radio station or make a playlist on your phone of your favourite songs to help pass the time whilst having radiotherapy .

    Never a silly question ,here when you need us.

    Debbie

  • Hi Pac2007. eat, drink and be merry... don't worry about putting weight on.. it's best to go in with a few pounds that you can afford to lose as things MAY get extremely uncomfortable and eating may become a problem. You'll probably be offered a PEG or other feeding tube, if so, take it.. it's a no brainer as far as I'm concerned.. 

    Get a fluoride varnish from your dentist... extra protection for your teeth.. your mouth will take a battering so take time to get your oral hygiene up to speed, it will help you in the long run.

    Loz (61)

    Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive.. 

  • oh, and moisturise your neck.. I used Aveeno unscented, but you can use any unscented of your choice.. nearer the time ask for Flamigel RT gel to use during treatment.. I didn't have any problems with my neck burning, blistering, etc.. it did become extremely red/tanned, but didn't break down... just something else to try and avoid..ask your radiotherapy team or your GP.. 

    There is only so much that you can control before treatment, so just prepare as best you can

    Loz (61)

    Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive..