Tonsil cancer diagnosis

Hi

Ive posted a few times on waiting for diagnosis, well Thursday I was diagnosed with SCC on my tonsil, its 2.1cm also in one neck node same side 3cm.  I have my MDT on Thursday 4th, hopefully PET scan next week some time.  They have said surgery first - tonsilectomy, neck dissection and teeth removal then a combination of RT and chemo.  They have suggested joining a study, hopefully they will start again in June.  The consultant and CNS have said it is early as tumour is small and unlikely to have spread but I cant get it out of my head, I had terrible chest pain but I think this is reflux as its worse after eating but I have pains under my arms and front of shoulder, I just hope Im being paranoid, which I probably am and the PET scan will be good.

Is it normal to feel lots of niggles and twinges while your waiting, I also have the most horrendous night sweats which I hope will go once the lymph node is removed, again does anyone have any experience of this?

Many thanks  Pamela

  • Hi Pamela 

    Suffering exactly the same diagnosis as you and treated last year I cannot recall any chest pain or heartburn in connection with the disease. Maybe anxiety related?? Hopefully your Consultant can shed light on that and maybe investigate if needed.  Personally once I was diagnosed I think I became far too aware of anything and everything relating to the state of my body and health. It is quite a crazy rabbit hole.  No night sweats for me but my brain went into overdrive and sleeping wasnt so easy. 

    You’re SCC HPV+ too? 

    Luckily I did not need any dental work prior to treatment. However teeth do suffer afterwards from the effects of the radiotherapy. Fluoride toothpaste is prescribed long term afterwards  

    Hope all goes well.

    Paul  

     

  • Yes HPV+ thankfully. Ive had loads of mucus at back of my throat, constantly swallowing, been like that for 2 months, GP gave me omeprazole and said it was silent reflux, then the tonsil thing took over and I never got round to taking them, now its back with a vengence.

    Night sweats are awful, had a few in the daytime too, Im hoping it will go with the lymph node, though could possibly be age related too lol

  • Maybe. If you are used to the excess mucus then the effects of the radiotherapy on your throat towards the latter part of treatment will be nothing new. It is crazy productive and really yucky. Hopefully, and with a ‘new you’ emerging from all this it will help fix your reflux *fingers crossed*. A bit of a trial tho and lots of swallow exercises needed. I had a PEG and there was over a week (last week of radiotherapy and week after) that it was really, really handy. 

    I hope you have good support at home to help get over this bump in the road. I was really glad to get treatment started as I wanted to get it done. All memories now...

    Wish you better. 

  • I like your thinking, every cloud has a silver lining, get rid of this reflux, my daughter left me with a hernia after pregnancy, which has never really bothered me till now but as ive lost so much weight I can feel it, so now trying to bulk up, eating all those cakes and sweets that been sitting in the cupboard for ages.

    Unfortunately the one thing im lacking is support as Im a single mum, however one of my friends can have the kids for a while, take them down to Devon, then if things get bad she can move in to mine with them for a while. Hopefully once I know the full treatment we can sort out the dates etc. She has even offered to drive the kids 400 miles up to Scotland to stay with my mum for a time too, mums not very mobile so cant come down. A real friend in a million. Whatever happens, I need to find a way and I will somehow.

    Covid has written off most of our plans for this year and cancelled our holiday so after this hopefully there will be a new me, remodelled and reshaped, cancer and reflux free

  • Hi Pamela, your story from start to finish is very like mine except the lymph node in my neck is about 1.5cm and I have 2 others in my right armpit.  Mind you the lymph node in my neck is on the other side to the swollen tonsil. 
     

    just wondering how you are doing? Coping?and hopefully a positive update to all of what you went through xx Really liked you posts and how you come across

    Lee B