Newly diagnosed Tonsil/Lymph Nodes

Hi Si. I know, one minute your living your life and then boom, your life is thrown into chaos and uncertainty. Life becomes a mixture of worry and hospital appointments etc. I hope everything goes well for you.

Hi Si. Welcome to the community. This diagnosis leaves us all with so many fears and questions. 
HPV driven oropharyngeal squamous cell carcinoma is very sensitive to radiotherapy and cure rates are in excess of 95% so hold onto that 
There are so many folk on here to help and support you so stick around. 
Stay off Google for now. It’s a useful tool but full of alarmist inaccurate and out of date information. 
The treatment is a real challenge but I managed it at 68 and I’m now three plus years clear and living a good life. 

Villabazza said:

Hi Si. I know, one minute your living your life and then boom, your life is thrown into chaos and uncertainty. Life becomes a mixture of worry and hospital appointments etc. I hope everything goes well for you.

Hi Villabazza. A big welcome to you too. 
Let us know how you are getting on if you feel up to it. 

Thanks all - yeah I'm still in a bit of daze to be honest. I have never coped well with uncertainty to be honest and now my whole life is uncertain. I can (mostly) deal with it sofar but seeing the effect on my children, particularly my younger son, is devastating.

Hi, Si. Welcome to the group, I was diagnosed, with the same in 2017. I had a MRI and a fine needle biopsy, I also had a PET scan to check it hadn't spread, I think this is routine, so don't worry about that. My treatment was both tonsils removed, 30 sessions of RT and 5 out of 6 chemo days. If you are asked if you want a PEG or a RIG feeding tube, my advice would be to have it everytime. I'm now 4 1/2 years post treatment, and still here like many on this site to tell the tale. If you have any worries or want to ask any questions, just ask away on here, someone will always come back to answer if they can. All the best.

Regards Ray.

Thanks Ray - is PEG/RIG the feeding tube down your throat if you can't eat? Thanks for your advice and help.

No, a RIG or a PEG are inserted into your stomach, it's a small operation to have it done, and usually one night stay in hospital, it takes about a week to settle down, and you take painkillers for any pain or cramping you may have. I think it is really worth having it, if you are offered one. I was 100% relient on mine for about 10 weeks, it also takes the worry away, if eating gets difficult, during and after treatment, some people have a NG tube which goes in through your nose. There are some people who manage without having any, Hope this helps.

Ray.

Thanks Ray...appreciate you taking the time to explain. 

Hi  Siko welcome from me I am almost 4 years Chemoradiation HPV positive I also have several infected lymph nodes as Dani says HPV i tumours do respond very well so radiotherapy so keep that in the forefront of your mind. The treatment is not easy I can’t lie but if I can do it anyone can any questions just shout there’s lots of us on here lots of us on here that can help. As for the pet CT scan don’t worry too much about that as I said I’ve got lymph node spread and I’m still here happily live in my life. If you want to give it a read it might give you some help and some advice and some ideas.

Hazel x

Thank you Hazel, will do