7 months Post treatment- Tonsil& Lymph T2 N1M0 Cancer

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Hello all, I hope springs arrival has lifted folk. 
I finished treatment on 11th August 2023. I’ve had 2 PET scans and neither have been conclusive so I’m now having ultrasound scans every 6 weeks to monitor my lymph gland particularly.  This in itself is troubling as I was fully expecting an all clear by now. 
Since February seemed to have turned a corner with my ability to eat and actually stomach food.  There are still a few issues but they’re manageable and to be expected.

however during the past 2-3 weeks I am experiencing increased pain in my tongue, that feeling of inflammation where my tonsils were, coughing a lot more again and an overwhelming tiredness. 

im due for my 2nd ultrasound this coming Wednesday so will discuss all of this with my oncologist. In the meantime have any of you felt this wave of discomfort so long after what seemed to have been a good recovery? 

Every little discrepancy throws me into a state of panic particularly as I don’t have the all clear yet. I’m experiencing pain in my leg, my arms and shoulders what feels deep in my bones. 

I believe few HNCs mastise if derived from squamous cell carcinoma but some do and present in your bones and lungs. Of course, that’s a worry if that’s correct.  

any one else felt this way or experienced secondary cancer from this?

thanks so much, and keep well. 
Nicky, Lossiemouth Scotland 

  • Hi Nicky

    T2N1M0 tonsil cancer HPV16+ finished Chemoradio June 2023.

    PET/CT scans clear in September

    Like you still having a few little niggles...I had expected this ....tough treatment with plenty of issues to overcome....fatigue hits when we least expect it.

    3 monthly review with oncology last week....they were happy....so I'm happy.

    Oncology team will keep you on track...ARI?

    Take care 

    Peter

  • I’m glad you’re doing ok Peter, must be a load off.  
    Im ARI indeed, great team. 
    Nix 

  • Hi Nix

    Ninewells Dundee for me...North Angus/Aberdeenshire....

    Recovery takes time ...you have gone through challenging treatments....worry of something showing up is always at the back of our minds.

    Sore throats and mouth often recur...our oral cavities are still tender...will be for some time.

    Peter

  • Hi Nicky,

    I finished my treatment Oct23 .In the last few weeks the side of my tongue has become sore and area on tonsil and back of throat.Pet scan last week showed hotspot although consultant not sure why.Thinks it maybe ulceration but getting biopsy next wednesday.I'm worried too cos i was doing really well but now have these "new" symptoms.Hope all goes well with you next week

    Turi

  • HinNicky just wanted to say hi and good luck for next Wednesday. HNC cancers can metastasise to our lungs and in time bones but try not to overthink easy to say but hard to do. They are keeping an eye on you and hope you get a good result soon. 
    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