SCCUP - proton therapy

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  • HPV16+ . 2 large neck masses . FNA then CT / MRI / PET . Unknown primary . No tonsils . 
    Completed neck dissection and tongue mucosectomy last Friday in attempt to find primary tumour . Material in pathology . 

    MDT indicate likely full course of RT without Chemo as I am nearly 70 - ie depending on pathology results . 

    would consider self pay Proton therapy in Europe to avoid some of morbidity . Any views that might assist please . Many thanks . 

    First post . Living in Ireland . 

  • Hi  

    I had six weeks RT at 68 and am now fine nearly six years later. 
    My oncologist used to deliver proton privately and it’s a discussion we have had a few times. His opinion is that IMRT delivers the same result as proton and that his ordinary RT patients recover well. 
    Proton doesn’t have an exit beam like X-rays for IMRT does so it is really useful for tumours near the brain or spinal cord but its entry beam is just as harmful as RT. 
    In the light of that information I wouldn’t spend my money 

    Dani 

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

     

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

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  • Hello Dani , 

    thanks for reply . 

    yes am in hospital recovering from neck dissection . I was considering proton as don’t think I can take the side effects of IMRT. 
    best 

    Gaza . 

    Scc HPV16+ . 2 large neck masses . FNA then CT / MRI / PET . Unknown primary . No tonsils . 
    Completed neck dissection and tongue mucosectomy last Friday in attempt to find primary tumour . Material in pathology . 

    MDT indicate likely full course of RT without Chemo as I am nearly 70 - ie depending on pathology results . 

    would consider self pay Proton therapy in Europe to avoid some of morbidity . Any views that might assist please . Many thanks . 

    First post . Living in Ireland . 

  • I was considering proton as don’t think I can take the side effects of IMRT. 

    My point was that there is little difference but do ask your oncologist. 
    I’ve done a search here for you. There are a few posts to look through 

    https://community.macmillan.org.uk/search?q=Proton#serpq=Proton&serp=1&serptag='head%20and%20neck%20cancer'

    Dani 

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

     

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

    Community Champion badge
  • Hi Like Dani says proton beam is on its infancy and the few I know have had issues as well there’s a trial ongoing at the moment but results aren’t due out yet. I was 61 and had 7 affected lymph nodes sm now 67 and living a good life. Remember we don’t get all the side effects we’re just told about them. I also had chemo. Read my blog below you’ll see I’m cycling eating quite well and 8 weeks after treatment I flew to Spain for 3 weeks. 
    talk to oncologist before you make decisions.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/

  • Thank you for your advice Dani and Hazel . 
    Gaza . 

    Scc HPV16+ . 2 large neck masses . FNA then CT / MRI / PET . Unknown primary . No tonsils . 
    Completed neck dissection and tongue mucosectomy last Friday in attempt to find primary tumour . Material in pathology . 

    MDT indicate likely full course of RT without Chemo as I am nearly 70 - ie depending on pathology results . 

    would consider self pay Proton therapy in Europe to avoid some of morbidity . Any views that might assist please . Many thanks . 

    First post . Living in Ireland .