HPV tonsil cancer recurrence

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Hello all,

well, it’s been a while since we’ve been on here. My husband was given the all clear six years ago but went back to be checked earlier this month after problems swallowing. He was checked by the oncologist, camera down the nose, she said it all looked ok. Recommended a barium swallow test and an MRI ‘to be on the safe side’. Today we were called in for an ‘urgent’ appointment with the head and neck cancer consultant surgeon on June 7th. Obviously we’re now terrified. I can’t find much about recurrence or treatments online. Anyone got any knowledge in this area please? Thank you! Xxx

  • Really sorry to read this RuthieSun, it's not a common thing but it does happen.

    I was diagnosed again two years after my five year all clear, but although it was in the same area (epiglottis specifically), they described it as a new cancer rather than a recurrence. Curative radiotherapy isn't an option unfortunately, causes so much damage first time around (assuming he had RT). I had surgery, nearly four years ago now, and I'm fine today, if a little changed....but I'll not go into detail, it may be totally irrelevant depending on how things progress for you.

    June 7th sounds a long wait for an urgent appointment though, I'd definitely chase his team on that and try to get it sooner x

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    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/

  • Oh   sorry you are in this fix. I remember your posts earlier on. Has your husband had his MRI and swallow test? 

    I agree with Mike. Ring up to see if he can be seen earlier. 

    Fibrosis is more common than recurrence so hold onto that.

    Fingers crossed

    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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  • Thank you! I’m pleased you remember me. He’s had an MRI and they want to do a swallow test. What’s fibrosis please? 

    Keep the Faith

    Ruth

  • I’ve put in for an earlier appointment if there’s a cancellation. Xx

    Keep the Faith

    Ruth

  • What’s fibrosis please? 

    Radiotherapy damages the tissues so it’s basically scarring. It can happen years afterwards as well as immediately after treatment. Scarring makes the area hard and less pliant. It’s why I do my swallowing exercises without fail every day even five years later. The only fibrosis I have is in my neck muscles at the back on the cancer side. I have to stretch and massage to stop it getting worse. 
    Fibrosis might account for the difficulty swallowing. 
    The “urgent” appointment might well be so that you are not kept waiting months for a routine one. It’s likely an admin term. 

    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
    1. Thank you! Yes his neck is rock hard and he is assiduous about the exercises. Definitely he has fibrosis on that description. But would that be the outcome of an MRI though? That’s what I’m wondering. You might be right about the admin term - bit insensitive maybe. I guess there’s no point speculating- though it’s impossible not to! Just trying to keep calm and hope for an earlier appointment. 
      xx 

    Keep the Faith

    Ruth

  • HunRuthue sun I too remember you from earlier posts I too am fast approaching 6 years. Can’t add to what others have said just wanted to say hi. Remember mri s are to rule things out as well as rule anything in. Sadly it’s the waiting game our treatment s brutal as we know and we can get long lasting  side effects years after treatment has finished. Fingers x and please keep in touch. 

    Hazel

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi Hazel, yes yours is a familiar name too! It’s so terrifying… and I’ve just been diagnosed with osteoporosis after fracturing my shoulder plus 2 spinal fractures.
    I think they must have found something on the MRI or they wouldn’t be doing an urgent face to face at the hospital. Just have to hope it’s not that dreadful.

    Love to all you brave and wonderful people 

    xxxxx

    Keep the Faith

    Ruth

  • Just to clarify, he had the MRI 2 weeks ago. The ‘urgent’ appointment on June 7 is to discuss the results. Which is why we’re alarmed. Anyway. We won’t know til we know. Nice to say hello to familiar people! 
    xxx

    Keep the Faith

    Ruth

  • HunRuthue I was  told at my last appointment if I ever needed them they would see me straight away no messing around so once again try not to read too much into anything . Easy to say I know hard to do.Oh dear re your oestoporosis Hope yiu are as ok as ok can be. Oh the joys of getting  older .

    hugs Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help