Husband with tonsil cancer - HPV +

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Hello

It has taken me a while to post, here goes …husband found a lump in his neck late December, finally had an ultrasound 10th Jan and was told there and then likely cancer. Biopsy confirmed. He has extra capsular spread in lymph nodes so they can’t be removed. 

He had his tonsils out and base of tongue mucuseptomy on 7th March. Tumour found in left tonsil with some spread to tonsil fossa. Surgeon got good margin in most areas of 4mm but 2mm in tonsil fossa.

We are still waiting for chemoradiation to start. So very down and worried at the moment about distant metastasis.

Anyone in the same boat?

Any words of wisdom reassurance? 

He is 51, non smoker, fit and active, rarely drinks. 

I am a total worrier and devastated. 

Thanks in advance.

  • Hi, thank you.

    What do you mean by the MX?

    Supporting husband with HPV + tonsil cancer and lymph spread 

  • Hi I dudnt have a peg but was tolf if I needed a ng tube during treatment  one would be fitted. By end if week 3 I needdd it it was a lifesaverr

    Thsnis for reading blog refer back to if as snd when  you need to. There’s a fab life to be had after treatment remember that I’ve just biked 60 km thus morning not bad for a 67 year old  

    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Blimey, I've read most things there is to read - my way of coping I think!

    Supporting husband with HPV + tonsil cancer and lymph spread 

  • Just be careful online stuff often isnt  regulated and stars are often out of date. All you need you can find in here. It’s ok if you know what and where to look. Trust your husband’s team they do it daily and we’ve been there or are going through it. 
    hugs Hazrl 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • What do you mean by the MX?

    Sorry. Trying to juggle too many balls. Wrong thread. I’ll go delete it. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Hi Peter, I’m so besides myself with worry. I noticed an enlarged tonsil in 2020 during Covid. Got it checked and told it was fine. 
    it’s now 2024, 2cm lump on my neck on the same side (cervical upper area). Uss came back as abnormal with no fatty hilum or whatever a node is meant to have. I Inspected my tonsil again, it’s still large and looks quite cysty. Like a bunch of tiny cysts. I know it’s that. I’m at the point of angry. Not yet been diagnosed but it’s been there that long, I’m so worried about whether I will be able to be treated. I’m 40 and a solo parent. It’s a very tough time in my life. I was 40 at the weekend. The anxiety of it all ruined my big day :( 

  • Hi   I see you are new to our community. It would be a good idea to start a new thread for yourself and we can all try to help. 
    I presume you are now under the care of an ENT team? 
    Have you an appointment to discuss the results of the US? 
    If it is cancer it’s likely to be caused by HPV and us curable. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Thank you. I will do. 
    I'm under ENT after a referral from my USS results.  My first consultation appointment is next week. 

  • FormerMember
    FormerMember in reply to LizzG

    Hi Lizzie 

    Finished chemoradio June 2023 and luckily the cancer treatment worked....it is a tough treatment but doable....68 years old when diagnosed....lots of ups and downs.... but there's light at the end of the tunnel.... posting this from The Canary Islands.... enjoying my food and my taste is returning....

    Best of luck and take care 

    Peter 

  • Thank you. I’m glad life is good for you. Hopefully I’m okay but if I end up being diagnosed, I hope to be saying something similar to someone else a year or 2 down the line x