Chances of recurrence

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Hi

My partner was diagnosed with T4N3M0 HPV related SCCC originating in the tonsil which spread to lymph nodes and tongue. He had daily radiotherapy 66gy 5 days a week for 6 weeks. He had cisplatin twice (3 weeks apart). We were so relieved when he received the news of NED on his PET scan in February. 
Recently I can’t stop thinking about what if recurs? I know we need to remain positive and be greatful for each day which I am. We never asked the Dr what the chances were of recurrence as we were both too afraid. I’m reading about this happening and it’s worrying me that we’re not out of the woods yet. We are 3 months post PET scan and the fact they ‘scope’ you every 6 weeks for a few years is reassuring but also daunting that they think it may return. Has anyone been given information on this please? Thanks Pray 

    • RosieFlower said:
      Has anyone been given information on this please? Thanks

    No, because there isn’t any. Everybody is different. 
    The fear of recurrence is real and it’s something we have to live with but as time goes on this fear recedes 

    Generally recurrence occurs within the first year and once you have reached that milestone the chances are good. 
    Have a read if this article about post recovery feelings. It may help

    https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

    Try not to worry. There is nothing you can do about it anyway. 

    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 it’s good to know chances improve after a year Blush 

  • Good evening RosieFlower, nobody knows if any cancer will reoccur we just hope that it never does, i have had it return twice yet most people are cured the first time, believe me its not good news when it returns so you must stay positive, and not let the thought of it returning ruin what progress your husband has made. He seems to have made a great recovery and im sure it will remain this way. All the best for his continued recovery, take care.

                                                                                     Chris x 

    Its sometimes not easy but its worth it ! 

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  • Hi Rosie

    That is wonderful that your husband has had such good results from his treatment. The fear of recurrence is always in the back of our minds but as time goes on it recedes further. I decided to put my trust in my medical team and let them be on the lookout for any recurrences. You get regular checkups so if anything does crop up they will be on it straight away. However this is fairly unlikely and it is only very few that get a recurrence.

    I decided that I couldn't live my life in fear as that is no life at all and after all I had been given a second chance.

    I also found that getting involved in things that I love really helped and took my mind away from cancer. The Peter Harvey essay that Dani mentioned was a real eye opener for me and very helpful.

    Wishing you and your husband a wonderful life going forward.

    Lyn

    Sophie66

  • Hi Rosie, it's great that his scan showed the treatment has done its job. I think we all worry about a recurrence, it's only natural to do so, however the worrying will get less with time. The checkups he will be having will be reassuring for you both, they will keep a close eye on him for the next 5 years. We are all here to help, if you have any worries or questions just ask.

    Ray.  

  • Hi please don’t waste time thinking about the what ifs think about the what you can do instead. Life’s for living don’t go down rabbit holes please. HPV driven tumours respond well and like Dani says get to a year is great. We’re checked as that’s what they do but my ent says we will know before the scope If anything’s amiss. I’m almost 6 years post and if I’m honest a glass half full person I never wasted time thjnking what if.
    Enjoy  summer the appointments get fewer as the years go by.Hazel x

    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.  It is great news about the clear scans post treatment. 

    I have lived with the very real knowledge that mine would make a reappearance over the last 4 years - and it has; twice.  My advice is to not worry about the possibility - easier said than done.  Both times it has been found during those routine checks, early on and delt with.  However, if at any stage your partner is concerned about a change in between checks do not hesitate to contact the clinical team and they will call him in and check invariably giving reassurance that it is nothing of concern.

    Live your lives to the fullest.

    Peter
    See my profile for more details of my convoluted journey