Hand hold after review appointment

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My husband is 8 weeks post treatment. Today we saw his oncologist. I’ve mentioned before about his neck lump still being very visible still. Today his oncologist felt his neck and thinks it’s unlikely that the radiotherapy has fully worked as his lump is still quite large and hard and therefore he will need a neck dissection. She wouldn’t commit anymore but said that she predicts that the PET scan will show some activity. I’m so sad that after all he has been through that the treatment won’t have worked. His oncologist has until now been positive about his prognosis but now seemed a bit more vague. I have looked but can’t seem to see anyone who has had a successful dissection after treatment. 

  • Hey  

    Thats not the news you need but don’t despair it’s not unheard of. A neck dissection should hopefully get rid of it all providing they get their skates on. I would push for as early an op as you can. 

    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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  • Thanks Dani  . I tried to ask at the meeting if he could have his operation now, but she said we would have to wait until his pet scan in another 4 weeks. She did say scans are also taking 4 weeks to come back. We have some savings so wondering if we should try and go private to speed things up with scans etc. 

  • She has a point. There is no need to bring the scan forward. This  is how you get false hotspots but you do need early reporting back. Private PETs are around £2K so worth considering. Do let us know how you get on. 

    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. Not the news you wanted to hear. I have a friend on the isle of wight  now 8 years post treatment. He had a lymph node that treatment didn’t get rid of it. He had private health insurance and was seen privately all the way through. He had the neck dissection around week 16 ( his pet scan was week 14) He was getting married  3 weeks later. The operation went ahead and 12 days later he married Emma. He’s not  on Macmillian but he’s living a good life. 
    He was at first like you in a state of shock, just letting you know his story. 4 weeks for pet t scan results is scandalous.I wouldn’t have it any earlier than week 12 but would consider going down the private scan route have a word with oncologist  surely they can push for the results there’s people on here recently that's had them back within a week where abouts  in the country are yiu if you don’t mind telling us ? 

    hugs Hazel xx

    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  

  • Oh thank you so much Hazel  . This is exactly wanted I needed to read. Feeling a bit calmer after the initial shock. I will update when we know more but I think I will definitely push to get the scan and results quicker even if we need to pay. 

  • I will definitely push to get the scan and results quicker even if we need to pay. 

    Don’t push for an earlier scan. 12 weeks is the earliest. Oncologists like to do them later if they could.  I had mine at 16 and STILL had a hotspot 

    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
  • Hi please do  not push for an earlier scan the treatment is still working and will show hot spots  I wasn’t scanned until almost 18 weeks my oncologist doesn’t scan any earlier 12 woks is the earliest that a pet scan will be done.
    Remember it still has time to shrink am not saying it will but to scan now is too soon. . Glad my info helped , both Paul and Emma were in shock when scan showed lymph activity , I met Emma through cancer U.K. she became my mentor, during my treatment.

    were all here for you 

    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  

  • Good evening Worrylo, I had a full neck dissection as well as an operation to remove a tumour in the floor of the mouth followed by radio and chemo, unfortunately, neither the operation nor treatment cured it as it came back about nine months later but they did remove suspect lymph nodes glands sometimes it takes more than one attempt to get the positive results. I cannot see any problems with your husband having a neck dissection and making a full recovery its just a shame the radiotherapy did not work as well as expected, sometimes its a gamble whether to have treatment first then an operation, or have an operation then radiotherapy. Im sure his consultant will take over now and see what the scan results etc show, i know what its like when treatment/surgery does not work the first time around but stay positive as he will be well looked after during the next steps . Wishing you both all the best, take care.

                                                                                      Chris x 

    Its sometimes not easy but its worth it ! 

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