First post - chemo radiation meeting tomorrow

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Hi, recently diagnosed with HPV throat cancer. Found a lump on the left of my neck around 8 weeks ago, diagnosed as cancer after biopsy. Tongue base mucosectomy found primary on right side of the tongue.

Surgery not an option due to location, so radical chemoradiotherapy starting shortly, meeting to discuss tomorrow. 

What should I expect in the meeting, and any specific questions I should ask?

Thanks

Jason

  • What should I expect in the meeting, and any specific questions I should ask?

    They will go through your consent form listing the side effects. NOBODY gets all of them so don’t panic. You’ll be given the number of your contact cancer nurse your CNS. There will be an appointment made to have your teeth looked at and at some stage soon an appointment to have a mask made and your radiotherapy planned. If you Google having a radiotherapy mask made Leeds Cancer Centre gave a good video. I’ll put up a link in my next post. ( sometimes the forum software doesn’t allow you tube links) 

    Ask if you are to have a feeding tube fitted before treatment. It may be a life saver. 

    Make notes, take somebody in with you to be an extra pair of ears and make sure they explain everything so that you understand 

    My cancer was at the base of my tongue and inoperable too. I’m past my five year mark now and very well. 
    Stay with us. You'll have lots of questions and we can help where your team can’t. 

    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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  • 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 ever so much, really appreciate you responding.

    i have a dental appointment tomorrow as well as oncology.

    Quick question, what’s the difference between having a RIG or nose feeding tube? What are the pros and cons please?

    Will watch the video shortly.

    Thanks again

    Jason

  • Hi Umvert and welcome from me.  A tube which goes through your skin into your stomach is either a PEG or a RIG.  The only difference is how they are put in.  They work in exactly the same way.  The NG tube is through the nose.

    Personally I could not face the thought of an NG tube so opted for a PEG.  I had it for around 5 months and used it for feeding, hydration and meds for some time before my throat settled down once again.  I would happily go down the PEG route again if needed as I had absolutely no problems with it.

    Having talked to others in the hospital who had NG tubes I feel that although the PEG is more invasive it was easier to manage and use.  Personal preference.

    I guess the pros of an NG is that there is no surgical procedure needed and it can be placed and removed relatively easily.  The cons are that I was told it was a faff to manage, but as I'd not had one I really cant say.

    The PEG/RIG is a simple surgical procedure.  I was in and out in about 90 minutes.  Although you have to manage it on a daily basis it is simple to clean and very discrete even when using it to feed with.

    If you do go for a PEG/RIG learn how to feed with it ASAP so that when you find you need it you are well prepared and it does not become a crisis.

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

    Macmillan have a description here 

    https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/nutritional-support/enteral-nutrition

    Badically RIGs and PEGs go into the stomach through the abdominal wall 

    Most centres that offer feeding support place these before the start of treatment. 
    Some centres wait till you can’t swallow and place a nasogastric. This is what they do at Swansea where I was treated. I had mine for eight weeks. 
    PEGs and RIGs are more complicated to put in, take a week or so to settle and are pretty robust in use.  NGs are quick to put in but can be dislodged by vomiting. I had no trouble with mine and I took it out myself. I wasn’t given a choice but I think I would have gone for the NG anyway. Quick to put in and quick to take out. Yes you can see it but that didn’t bother me. 

    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
  • Peter beat me to it 

    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
  • Hi Jason

    Sorry you’ve found yourself on here we are a small friendly group always happy to help. I’m Hazel 6 years post radiotherapy and chemotherapy for tonsil cancer Hpv 16 positive.  with several affected lymph nodes. Happily living my life. 

    My trust didn’t routinely die pegs or wigs but I had to consent to a n h tube if I needed it  I had one fitted end of week 3 and I took it out end of week 3 recovery  it was my lifesaver I didn’t mind  it being through my nose and visible as it  if did he’s job  if did that and enabled me to   make a fairly quick recovery .

    good luck for tomorrow 

    Treatment is hard and recovery can  be challenging. 

    My blog link below might help. 

    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 Umvert, welcome to forum which I’m sure you will find invaluable as you go through your treatment journey. I too had. RIG tube fitted prior to my treatment which became increasingly necessary as my CT/RT progressed. Fitting was easy and soon settled down after a few days and removal post treatment was straightforward. I was able to take my food and drink via the tube as I was so nauseous.

    All the best with your treatment.

    - John

  • Hi Jason 

    Just be direct, ask about the nitty gritty of the treatment, no point in sugar coating Chemoradio, it is a tough gig, better to be prepared..... ask about PEG feeding as it can aid recovery and keep your weight steady..... also ask about pain  management and meds frequency....a lot to take in especially when trying to deal with the reality of cancer.

    Peter 

  • Thank you so much everyone.

    Had my meeting, 35 sessions of radiotherapy over 7 weeks with 7 chemo (Cisplatin).

    Have to have a tooth out this week, so treatment won’t start for 4 weeks.

    After discussion, agreed to have a PEG fitted.

    All very daunting, and my main concerns are over the long term potential side effects.

    But fingers crossed I will be cured and can try and live my life after.

    Thanks again

    Jason