Husband with tonsil cancer - HPV +

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

NicNack said:

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

Hi NicNack 

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. 

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.

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?  

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.  

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

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. 

NicNack said:

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 

NicNack said:

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.