Tonsil cancer newly diagnosed

Hi Helen This is Hazel welcome to our community grouo.  I’m almost  4 years post radiotherapy for hpv 16+ tonsil cancer. The waiting and not knowing us the worst part honestly. I can’t lie the treatments hard and recovery can be longer than we would like. But tonsil cancer is eminently curable. I’ve been in your  shoes moments of positivity and then down as low as I could  go Once you’ve got your plan in place everything  clicks. Rant at us shout at us we’ve been there done it got the t shirt. Now happily living my life riding my bike. Please ask any questions .one to ask your oncologist b( are you h p v positive) It’s highly unlikely it will have spread to  your lungs , mine had gone to 7 lymph nodes  but my lymph nodes  did what they needed to they stopped the cancer spreading. I am a glass half full,person and for me once I knew what the plan was I for on with it head down and day by day. Please keep off Dr Google you’ll scare yourself silly. 
take pen and paper tomorrow and walk in head held high  you’ve got this. Let us know how you get on please we are all here for you. 
Hugs Hazel x

Oh thanks Hazel! I read your blog and also your replies on this forum and hugely appreciate your quick response and positivity :) 

Yes, the consultant was chasing the lab for the HPV result and I do "hope" it is positive - seems a strange thing to hope for, but I've read that it responds well to RT.

I have questions written down for my consultant, including staging, hpv status, lymphs, will it be worth having the Robotic surgery in my case or direct to chemo/radio....

I'm the same, once I have a plan I can lock on and go for it and I welcome the focus this brings. The waiting and what iffery are the worst!

I'll let you know how I get on with the consultant and dentist tomorrow. 

Helen x

Hi Helen. Hope  blog helped it was the only thing I could retain a modicum of  control over. Now it’s a life if it’s own and seems to help others which is great. Stick with us on here we will all help you. 
Fingers x for dentist I dreaded that more than actually meeting oncologist.my oncologist is lovely hope yours is too. 
Try to sleep tonight I know it’s hard.

Hazel x

Hi Helen.

It is a crazy frightening world we are thrown into but knowledge is power as they say. Make sure you take somebody in to your consultation with your oncologist and that you understand everything they say. By next Monday the unit's MultiDisciplinary Team would have  met and decided on a plan fort your treatment. Most tonsil cancer is now due to Human Papilloma Virus which is exquisitely susceptible to radiotherapy and cure rates are high, in excess of 95%. There does seem to be a subsection that spreads elsewhere very early on before symptoms appear but this is extremely rare. In the nearly four years I've been here I can recall only three

Your oncologist will go through your consent form listing all the side effects but really nobody gets all of them and they can all be mitigated

I was knocked out by the treatment for a few weeks, couldn't eat for a while, felt pretty sorry for myself at times but at the age of 68 I got through and generally we all recover pretty well.

I know it's hard to calm down. Your mind races between optimism and deep pessimism, you bargain and look for something to tell you it's all a dream. Keep busy. The chances are you'll be OK.

Good luck

Hi Helen, you are right when you are first diagnosed with cancer, it does knock you sideways. Like Hazel and Dani have said the treatment is tough, although doable, with very good results. When you know your treatment plan and things get moving , you will feel a lot better, about it all. Always come on here and ask, any questions you have, someone will come back with an answer if they can. All the best.

Regards Ray.

Hi Helen

Welcome from me and I totally understand the tonsil pain.  3 times for me...  Fortunately I've not gone onto radiotherapy - keeping that in case of a further reoccurrence.  It is probably unlikely to have moved anywhere from the tonsil - although often it presents firstly in a neck lymph node.  Certainly they will check.

Your feelings a quite normal, and as others have said, your mind will settle down once you have agreed a treatment plan and are cracking on in the right direction.

Like many others on here I am a few years past diagnosis and enjoying life to the max; walking, sailing, holidays, eating out etc.  Being younger and generally fit and health will greatly help you in your own recovery.

Stay with us and there will be plenty of advice to get you through the next few months.

Hi Dani - thank you for your guidance. I've love your blog, and Hazels; both of which give me hope. I'm just torturing myself with the 'what ifs' and although I know it's senseless, I can't help it and I suppose it's only human.

Once the waiting is over and I've got my plan in place I think it will get better, psychologically at least. I'm a positive person and never shy away from a challenge. Staying positive is half the battle as they say!

I'll be taking my hubby today and to the oncologist appointment next week and I will also take notes. He is not shy to ask questions, a bit like me, which will be a great help.

I'll keep you posted, thanks again,

Helen x

Thanks Ray, I agree, the waiting is the worst.  I'm really glad I found this community, it really is a massive help psychologically and the advice and kindness are invaluable.

I'll keep you posted and will try to keep it all in perspective!

Helen x

Hi Peter - thank you so much for the welcome and kind words.

I'm hoping that my general health and age work in my favour and once a plan is in place I know I'll focus and get into battle mode! But so far all I've had is bad news I'm feeling a bit sorry for myself and just want something 'positive' that I can work with.

I keep thinking every cough is something sinister and imagining my chest is wheezy... probably being stupid but I can't help it. It doesn't help that we're having our kitchen re-modelled and they're taking the floor out right at this moment so there is some dust, which we're keeping to a minimum luckily!

Your positivity and return to health is fantastic to hear, thank you!

Keep you all posted!

Helen x

Keep the faith. There are lots of people here who’ve done it and are thriving. Hugs