Hi Jimmy. So sorry to hear about your diagnosis. It is always a shock when out of the blue you get a cancer diagnosis. You will get the very best treatment whether your cancer is HPV driven or not. I had jaw cancer and mine was not HPV. I had the same treatment (an op and radiotherapy) as anyone who's cancer was HPV and had the same good results. It is now 3 years since my last op and all is going well. This is a hard time waiting for results and an outline of treatment. However once things move forward it does become easier. There is light at the end of the tunnel as I can assure you as I am living a great life now.

Lyn

Hi Jimmy, sorry to hear of your situation, and although I can't offer you any help regarding P16 negative, I can point you towards this post, which will hopefully offer some helpful advice.. (+) Helpful tips for those about to start treatment.. - Macmillan Online Community

Hi Jimmy, I’m really sorry to see you here, my husband has completed treatment and we’re waiting (both terrified and exhausted) for the results of his PET scan.

Check out my post - 

T4 non HPV head and neck cancer

and my profile.

I’d not heard it mentioned as P16 negative, I had to look it up

Were UK based.

Happy to answer any questions you may have.

Stay with us. The people on this forum are a real life line.

Hugs from Wales.

Debs xx 

Hi Jimmy 

Welcome but sorry to see you here. The treatment for HPV + and - is the same and both respond well.  HPV driven oropharyngeal cancer responds very well to radiation and there have been many trials to see if the treatment regime can be de-escalated to give a lower dose which is why you read much more about it, that and the fact that there is now a vaccine which offers some protection. 

So hold onto the fact that cure rates are high, nevertheless.

Stay with us. there are lots of folk here too help and there is always somebody around to talk to

Jimmy said:

Thank you in advance for any support you can offer

I've made another link for Deb's post as her's doesn't seem to work

T4 Non HPV Head and Neck Cancer

Hello Jimmy,

Sorry to hear of your diagnosis, sending you lots of strength as you navigate early stages of treatment.

I've been quite quiet on here recently as I'm week 5 out of 6.5 of treatment so resting lots. 

I did want to pop on though to say please stay here everyone on this forum is so supportive and responsive.

If I can offer some reassurance I was diagnosed 22/02 with stage 4 spindle cell squamous cell carcinoma of tongue which had unfortunately spread to my mandible and one of my lymph nodes - medically I am T4N2aMO. HPV negative. 

I had a hemiglossectomy, hemimandiblectomy and reconstruction from my left shoulder and right neck dissection on 1st of April I spent 3 weeks in hospital I had a Tracheostomy for a little bit longer due to a collection but was discharged on 17/04 started 6.5 weeks of radiotherapy and 6 sessions of chemo on 19/05.

As others have said treatment is tough but you will get through it lean on this group as much as you need to. Try and stay off Dr Google - I do now I'm on this forum. 

Take care x