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Hello - tonsil cancer

Slurb
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Sorry to say that during the back end of June I was diagnosed with a secondary metastasis (SCC)  in one of my neck lymph nodes. A PET-CT found the primary in my left tonsil. All the indicators are that it’s HPV+ but that has to be confirmed by biopsy. My clinical grading is T1/T2N1M0. On the 1st of this month (3days ago), I had an elective left neck dissection and both tonsils out via laser. I’ve also enrolled onto the PATHOS trial so 8more biopsies have been taken.

i’m at Home now... but wow! The pain is impressive! My neck is super swollen too where they took out my lymph nodes. Could someone tell me whether or not radiotherapy is just as bad?

 

 

  • Hi Slurb, 

    Welcome to the forum.

    I read your post and wanted to quickly just try and connect you up with a couple of members who I know will be able to help. [@RadioactiveRaz]‍ and [@Hilts911]‍ will both have some words of advice and experience to share with you. You can read more in a recent thread that they've been posting on here. 

    We do have quite a number of members and threads here fon the forum from people relating to tonsil cancer. If you use the serach function (magnifying lgass in the blue bar at the top of the page) you should find plenty of posts to read through. 

    I hope this helps as a starting point for connecting with others here on the forum. 

    Best wishes, 
    Jenn
    Cancer Chat moderator

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    Hi Slub

    this is Hazel aka RadioactiveRaz I am almost 12 month post radiotherapy for tonsil cancer with affeylymph nodes no neck dissection as one lymph node was too close to my spine .i gitbyhe all clear in January I have a blog detailing my experiences 

    www.radioactiveraz.wordpress.com I do a week by week then month by month blog of my experiences ok we are all different but yet the same. Plus links to other blogs answers info I was h p v 16 + as well. The blog will show the most recent post you have to scroll down for the start of it .

    Radiotherapy itself doesn’t hurt it’s the side effects which can ve varies I didn’t have a leg as oncologist said I could maintain swallow but if I didn’t Harv to agree to a nasal feeding tube which in week 4/5 I did for 6 weeks. We all react differently i git a 3 rd degree radiation burn tha wa due to my nodes being in the blast region also  a burn the full length of my tongue.but as you read my blog it’s not all doom answers gloom we’ve managed 4 trips to Spain since treatment finished ans am back riding my bike last week I did 60 km for my cancer centre head and neck charity raised nearly £1200. 

    Ask any questions if u as a 61 year old wimp of a female can do it anyone can !

    keep in touch good luck keep on top of painkillers is my best advise no grin n bear it plus eat as much as yiu can when throat allows before treatment starts. I put 11 lb on double chocolate magnum I’ve creams !!! Lol

    Hazel x. 

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    Hi Slurb,

    Welcome to the forum. Lots of people on here are posting post treatment after being given the all clear. I didn't even get all the numbers T1/T2N1Mo etc, i was just told when the biopsy was HPV+ and the cure rate was 94% and they successfully treat up to Stage 4 tonsil cancer (I think mine was Stage 2 but htye said not to worry). Mine had spread to some nearby lymph nodes which they also nuked with radiotherapy.

    Main thing is not to worry too much there is a Grade A World Class treatment for this type of cancer and nearly all survuve it. I had 2 x chemo (not so bad, bit boring sat there all day and tired for a few days afterwards but nothing as bad as you imagine) and 35 x radiotherapy 5 days a week x 7 weeks. Radiotherapy is quick (10-15 mins) and painless. Just the side effects are a bit ***, dry mouth, possible feeding tube in tummy, maybe eating and swallowing problems for a while after but they get better, maybe not 100% but you only find how good you'll be 2 years after treatment which is still 1 year 4 months away for me, but I'm getting by ok.

    Read RadioactiveRaz's blog for an in depth story if you want all the ins and outs. I just took at as it came, didn't want to know too much, just left it to the medical team to cure me, and took a one day at a tme approach, and if they'd anything to tell me, then they would. I thought if i knew everythig to go through before it would seem more daunting. However, people deal with it in different ways, no right or wrong. 

    One thing you can count on is excellent treatment and fantastic follow up care from Macmillan nurses. you'll be in good hands!

     

    Mark

     

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