Radiotherapy after surgery with young children

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 Biopsy on lump on tongue 

Above is my previous thread where I was waiting on biopsy results which confirmed cancer on tongue.

I had my histology results yesterday from my surgery which they said had good margins aim for 5mm had 4.5. Out of the 40 lymph nodes taken on left side, 2 contained cancer cells but towards the jaw not further down neck which is good. They were also contained in the nodes not burst. My throat biopsy came back clear too so unsure why sire throat for months. 

So overall good news but they want me to go on 6 weeks of radiotherapy. I'm having mask and scans Monday with a view to start 2/3weeks. 

Guess I'm just seeing how brutal this will be with 2 young children. They're talking about a RIG tube will this be really needed? I hated the ng tube they also recommended from surgery it constantly Hurt my nose. Any tips here?

Bit scared and anxious as Sumner coming, my daughters school holidays will I be able to do much, the uncertainty is unnerving x

  • Guess I'm just seeing how brutal this will be with 2 young children. They're talking about a RIG tube will this be really needed? I hated the ng tube they also recommended from surgery it constantly Hurt my nose. Any tips here?

    Bit scared and anxious as Sumner coming, my daughters school holidays will I be able to do much, the uncertainty is unnerving x

    Hi Claire. I had an NG tube and found it ok but if they are advising a RIG then jump at the chance. With an NG tube you do look awful and that might be important with your children. 
    The RIG takes a while to settle but it might well save your life. Some people get through without one but few. 
    Do you have a start date? 
    I felt pretty awful from week 4 and had my NG in for 8 weeks. The first two or three after treatment end are the worst but slowly slowly I felt better and by the end of six weeks after treatment I was not so disabled by it all. By 12 weeks I could eat though it tasted of nothing. I was on morphine right up to then. 
    Who is your oncologist? 

    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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  • PS. You are much younger than me so should do better 

    Avoiding chemo is great, too. 

    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
  • Oncologist is Dr Karimi, I'll be treated in Singleton hospital too. 

    I have my plan/mask fitting on Monday so should be a few weeks after I'm guessing end may/early June. 

    I'm seeing someone Monday about RIG as I'm I'm 2 minds but think will take the pressure off. 

    So first few weeks I'll be OK then it will kick in later. I was told last few weeks & whem finish the treatment will be peak :( 

  • Hi Claire,

    • My husband was diagnosed with tonsil, base of tongue with lymph nodes involvement last year T4N2M0 last year, no surgery.... Yes, the radiotherapy was brutal, everyday for 6 weeks with a couple of chemo sessions, he managed without strong meds until the 6-7 th week, then he had fentanyl, morphine and can't remember what else, didn't like how the fantanyl made him feel, so stopped after 2-3 week, food was a big challenge, but, he didn't have a tube, he did lose nearly 3 stone, but, I have to say he coped with it all amazingly well. You have the surgery and two small children to cope with, which is a whole different ball game, you are going to need the help from your family and friends..thinking of you at this awful time xx
  • As a ps from my previous reply, I would ask the oncologist/specialist if you can try without the tube and see how you go, which is what my husband did, of course it may not be possible in your case. The Professor at The Christie Manchester supported my husband in his request, and said not everyone needs a tube, and said he  used  the wait and see approach, rather than fitting one as a matter of course. Xx

  • I would ask the oncologist/specialist if you can try without the tube

    It very much depends if you have weight to lose. I didn’t and could never have afforded to lose three stone. I know the oncologists at The Singleton prefer to place feeding tubes reactively so if proactive placement is being discussed there must be a reason. 

    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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  • Hi again Claire. I don’t know Dr Karimi but I do know the dieticians, SLT and CSNs are brilliant 

    Yes the first one or two weeks after treatment are really pants but it doesn’t last forever. 

    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
  • Yes, I think you just have to take the advice of your own specialist in these cases, my husband didn't really have the weight to loose either,  however, he really didn't want the tube unless absolutely necessary, the fact the the Professor at The Christie agreed and supported my husband choice helped emensly...as the Professor said " it's not  inevitable that patients will need one"... He was right, so, my hubby was glad he trusted him and his own gut..

  • I know its hard to know what to do, what I'll be like. It seems that if I want a RIG I need to have it before we start. Or it will be an NG if needs be. I'll get more info Monday when we discuss this.

    I really don't want one unless I desperately need it as I've heard some awful stories about them, stomach problems etc. I'm not big but I do have little weight on me. Would look ill if I loose more than 2 stone tho, as a back up. 

  • All I can say is that my oncologist signed me off a week ago. He was pleased with how well I had recovered with perfect swallowing and little fibrosis. He put it down to the fact that I put myself in his hands and did what I was told. Worryingly he said that many people don’t and suffer as a result. 
    I am medically qualified and I found doing what I was told difficult. I could see the shortcuts. Thankfully I admitted he knew more than I did. 

    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