Rig advice please.

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Hello, so my husband will be starting radiotherapy 3 weeks today.  When the consultant told us of the treatment plan, he said that a rig would be fitted.

When we saw the dietician a bit later that day, she gave my husband the option of having it fitted.

My husbands cancer in his throat (tonsils) does not affect any of his eating habits at all.  He is fit and well and to see him you wouldn't think there was anything wrong.

My husband is now saying that he doesn't want the rig fitted.

Please advise on how bad radio therapy can be to the throat - please be brutally honest.  He really doesn't want either the stay in hospital or have the tube from his stomach.

We are going to discuss this when we go into hospital this Thursday when he has his radio mask fitting.  But just want advice from those who managed to get through without it.

Thank you for your time xx

  • Please advise on how bad radio therapy can be to the throat - please be brutally honest.  He really doesn't want either the stay in hospital or have the tube from his stomach.

    I had radiotherapy to my throat. By week four I couldn’t swallow even water. I was in a lot of pain. I had a nasogastric tube fitted so that I could get liquid meal replacement and analgesia in. It was in place for eight weeks. 
    RT really stuffs your mouth and throat full of ulcers. 
    If he is offered a stomach tube he should take it 

    My husbands cancer in his throat (tonsils) does not affect any of his eating habits at all. 

    It will. It will either make swallowing extremely painful or impossible. 
    The treatment works but it’s really tough 

    Some people do manage by sheer grit to get through without

    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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  • Thank you Dani - much appreciated.

  • I had Chemoradio for Tonsil cancer, by week 2 -3 could not get anything down  ended up in hospital to stabilise my weight, feeding tube was my life saver.

    Peter 

  • Hi I had right tonsil cancer ans by end of week 4 I was struggling to sip water Until you’ve been in that position you can imagine not even being able to swallow your own saliva. My trust didn’t routinely fit rigs of pegs but I consented to a n g tube if I needed it   It was my lifesaver. I also credit it me making a great recovery. My blog below gives you an idea. 
    slm

    my nutrition hydration and  medication went through it. I too was fit having the weeks before diagnosis cycled 1100 km in Spain. 
    some manage without but they are the rare ones. 
    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/

  • Hello

    I was horrified when my oncologist mentioned putting a RIG in.  This was a couple of weeks before treatment started.  I came close to refusing it….but he was pretty insistent and he was absolutely right.  I don’t want to be over dramatic but it quite literally saved my life.  Like your husband, my tumour did not affect my eating before treatment…indeed I wouldn’t have known it was there had a lymph node not blown the whistle.  Nonetheless I became totally RIG dependent during treatment and for some time afterwards.  My strong advice would be to have the RIG.  If he doesn’t need to use it then that will be great….but  if like me he gets to the stage where he can’t swallow it will be a godsend.

     I wish him all the best for his treatment.

    Liz

  • Thank you so much Liz for this x

  • I had a peg fitted, it appeared to be routine at Mount Vernon, and boy was I glad that it was.  Not far down the line it became my best friend, food, water, medication all went down it.  I still managed to loose quite a bit of weight but it helped me so much, goodness knows what would have happened otherwise.  The ulcers I had were so painful and lasted for several months.  I got used to the routine very quickly and it was so easy to put everything through it.  I would say definitely go for it, there are very few that manage without one.  He might just be a lucky one.  

    I wish your husband all the best with his treatment.  There will always be someone here to help with any issues or questions you or him may have.  I am now 11 years out of treatment for base of tongue HPV, still have a bit of a dry mouth and throat but manageable and life is good, especially as I have retired now.  Have a great Christmas, a great time to get as many calories down as possible to set him up for his treatment.

    All the best

    Dawn

  • My advice to anyone is if they are offered a RIG or a PEG have it. The RT can within 3 weeks make it near on impossible to swallow anything, even water; by having the RIG it takes away the worry of not eating. Some people didn't need to use theirs, but most do, and they were very pleased to have it, including myself.

    Ray