NEWBIE and REACHING OUT ——- Tonsil &Lymph nodes HPV16

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Hi.  So I’ve been lurking around this page for a couple of days now and have found hope in many of your posts.  I thought it was time I said hello and gave a little of my story as I guess I’m going to be relying on you all a lot more. (Hope that’s ok).

Like many on here I noticed a lump on my neck but unlike most I ignored it for many months (I had my reasons).  When I did see a G.P. (Jan 24) It all moved forward quickly.

Biopsy on neck (Jan 24) found it to be cancer and many scans followed to find primary site.  The primary was never found on scans so TORS surgery last month where they ‘suspected’ it was.

Pathology results confirmed it was in my right tonsil and I was offered to either be part of the Pathos Trial or purely chemoradiotherapy.  I didn’t feel remotely intelligent enough to make this decision (jeez I can hardly spell my own name of late). Anyhoo this week I have agreed on the Pathos Trial.  I will have surgery again next week TORS and neck dissection.  My thinking is that as we know it is remaining in the tonsil area and sneaked over to some lymph nodes the more that can be ‘cut away’ possibly less treatment at the other end?? Although I’m aware I will need radiotherapy at the very least.

I kinda know what to expect from TORS now but looking for experiences of neck dissection and how to care for scar and radiotherapy and all that goes with it?

Sorry for the long post and all the questions .

  • Hi Alli. Welcome to the club that none of us really want to find our self, but now you’ve been looking on the pages and you’ve made the jumping joining as. I can’t help on  the tors that. I didn’t have a neck dissection, but speaking for others. They’ve all coped quite well with it and within months in most cases, can’t even tell where the scar  wars bio oil is good for rubbing into scars   After they have healed as for radiotherapy we can all help on here with that. Have a look at my blog details below and that’ll show what I went through nearly 6 years ago now I’m also right tonsil, seven affected lymph nodes and HPV 16 positive it’s not easy, I was 61 one diagnosed and I got through it and I’m sure you will too.

    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  

  • Hi AlliK

    I was diagnosed with T2N1M0 Tonsil cancer HPV16+ in February 2023.... finished chemoradio June 2023.... no surgery..... most of the offending Tonsil was removed during biopsy procedures.... the rest...and the other tonsil.... zapped out of existence with chemoradio .... treatment is a challenge but manageable.... most of us on the forum have walked the treatment walk so keep posting for advice and support.

    Best of luck and take care 

    Peter 

  • Hi AlliK

    Everyone is different, but I have had 2 neck dissections and both have been easy to recovery from.   Recovery was relatively pain free.  Plenty of cream like E45 help the scarring.  You have to look hard to notice my scars as they will cut you in natural folds in you neck if at all possible.  The type of surgery nowadays is nothing as dramatic as you see on Google. It is much more refined.

    You may have some movement limitations in your shoulder - the extent will depend on how much they disturbed the nerves during surgery.  With physio I restored full movement over around 18 months.  At no time was anything limiting on my quality of life.

    I found that sometimes my dissection scar tightens up and a hot shower with a massage head directed onto the scar worked for me.

    Like everything relating to this treatment, time is the great healer.

    As to radiotherapy.... The treatment is brutal, but we have all got through it and recovered to a good quality of life afterwards.  I am now 9 weeks post treatment and am on holiday, eating and drinking (non alcoholic).  I still have difficulty and pain but each day is generally better with the occasional blip backwards.

    Peter
    See my profile for more details of my convoluted journey
  • Hi There, I'm also on the Pathos trial at Derriford in Plymouth although I live in Cornwall 2 hours away. I had both tonsils out 22nd March ( quite painful but they give you lots of mouthwash and morphine) still feels lumpy and a bit sore even after 4 weeks. I'm going in for neck dissection on Monday and more of the tonsil bed needs to be removed as they didn't get clear margins so after being told it's stage 1 looks like it's stage 2. If there is no spread to nodes then they will just monitor me ( Group A in the trial) or if they find it in the nodes I will be randomised within the trial depending on pathology outcome. Good luck.x Mine is right tonsil hpv 16 positive

  • Hazel, thank you for responding.  I will have a longer look at your blog when I’m home from work but the quick nosey I’ve had is making me feel lighter about it all.  I’m 53 and do not have the fitness level you have so maybe this is the kick in the butt I’m needing. 
    thanks 

    Allana 

  • Pleased to virtually meet you Peter.

    I hope your not offended but it’s really good to read that so many people have(had) the same type of diagnosis.  The news was a shock but to have a type I had never heard of felt very surreal!

    I really did swither as to choose your treatment plan or go for surgery again.  I think the offer of the trial swayed me as they say they see you more as they collecting data and that seems selfishly reassuring.

    Best 

    Allana

  • Hi

    Again thank you for your kindness in replying, especially while on holiday. I’ve read your diary and the symptoms seem similar .  Your progress is a very honest account and I’m pleased I’ve read it as I had no idea what to expect .  (To feart to Google anything).  
    loving reading that eating etc is good as meals out is suck a social activity and have been dreading any awkwardness around that.

    As I say next lot of surgery is Wednesday so be prepared for more questions and quite possible at random times?

    regards 

    Allana 

  • Hey..

    thanks for reply.

    yes, my right tonsil was removed last month and it was more painful than anticipated. Like yourself they need to go back in and ‘scoop’ more away from that area and as it’s in a few lymph nodes they will remove whatever they find.

    as for the trial I’m going to be in either group B or C but crossing everything that I’m b and randomised for lower doses.

    good luck for Monday and keep me posted as I’m just a few days behind. 

    Best

    Allana 

  • Hi Allana

    Best to keep Dr Google to a minimum.... this forum is brilliant for support and understanding.

    Peter 

  • I'll keep you posted, good luck.x