Husband with tonsil cancer - HPV +

  • 65 replies
  • 140 subscribers
  • 2156 views

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 try not to worry I was 61 when diagnosed now almostb6 years post chemo radiotherapy for tonsil cancer with 7 lymph nides no op possible. Treatments hard but stick with us in here we’re all happy to help Plus trust in his team they do it day in day out. Best advise take medication as directed and if he has a peg fitted use it don’t struggle if like me it’s a ng tube when needed again use it. Blog  below might help. Many of us were fit non drinker non smokers has he got his HPV status most of us have HPV derived tumours. Dont stress about distant mets it’s highly unlikely at this stage his lymph nodes are doing what they are supposed to do contain the cancer. I noticed my lump in a March  was july before treatment started. 
    hugs 
    Hazel x

    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  

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

    Hi  

    Distant mets do occur but they are pretty uncommon. Will your husband be having a PET/CT or a chest CT before he starts. ? 
    Hazel has pointed out that most oropharyngeal cancer is HPV driven and responds very well to chemoradiation. It’s very curable. 

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge
  • It is unlikely that there will be distant mets.  Did he have a PET scan?  My hospital does a whole body PET scan to check at the same time as they are scanning for the primary.  As a routine they will have checked his chest during a CT scan - or just a chest x-ray - and would have detected anything abnormal.

    Peter
    See my profile for more details of my convoluted journey
  • Hi NicNack

    Noticed swollen tonsil then associated neck lump in 2021....Nearly 2 years before I was finally diagnosed with tonsil cancer

    Treatment is tough but success rates are circa 90%.....keep posting for advice and info.... most on here have walked the treatment walk...the future is always a worry for patients and carers...nothing we can do about it so we just make the most of life.

    My CRT treatment for HPV16+ tonsil cancer finished in June 2023....had a PEG feeding tube fitted prior to start of Chemoradio which certainly aided recovery.

    Take care and best of luck

    Peter

  • Hi, thank you for replying. I read your blog back in January.  HPV positive and lump noticed end of November - it's been so long.  They are not planning on giving him a PEG?  

    Supporting husband with HPV + tonsil cancer and lymph spread 

  • Hi, he has had his PET and CT scan and was clear.  Am i panicking uneccesarily? Or is this normal?  The tonsil tumour did not show on the scans either.  

    Supporting husband with HPV + tonsil cancer and lymph spread 

  • Yes they did and all was clear. Thanks for replying.  Much appreciated.  Nic

    Supporting husband with HPV + tonsil cancer and lymph spread 

  • Thank you Peter, it seems to be taking so long. We just want the radio/chemo to start.  It is torture isn't it? I am glad you are nearly 12 months on now but it sounds like it had been a long road prior to that. 

    Supporting husband with HPV + tonsil cancer and lymph spread 

  • Hi, he has had his PET and CT scan and was clear.  Am i panicking uneccesarily? Or is this normal?  The tonsil tumour did not show on the scans either.  

    Deleted. Wrong thread 

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge
  • He is 51, non smoker, fit and active, rarely drinks. 

    I am a total worrier and devastated. 

    HPV cancer has nothing to do with smoking/drinking. It’s very susceptible to treatment. Cure rates are high. 
    I hope you are leaving Google alone. Keep talking to us here. There is a wealth of experience and hope in these pages. 

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge