Introduction

Hi Graham, I'm julie, 52, boy 15, girl 11 and pretty much exactly where you are though have had a few more weeks to get used to the idea. 

I am going in on weds for my surgery, both tonsils and bit off tongue as no sign of primary on scans.

I think the feeling of detachment is maybe a mix of shock plus everything moving along at such a pace around you. I have been feeling pretty much OK about it all, would rather not be here but at lea it is very treatable

Hi Graham and welcome to this forum.  Here you will get lots of advice as to how to get through this.  Nothing clinical - that is for your hospital teams - just great advice on how to cope with the treatment and the emotions from people who have been there, patients and loved ones.

Sadly not finding the primary is not unknown in this cancer.  It does layer on some stress - I know I went primary unknown for over a year.

What they are saying makes sense regarding the surgery and a number of us have been there!  After my first lot of operations (3 of them) I did not go on to radiotherapy.  Instead I went on to what they call watchful waiting.  That looks to see if the primary shows up or even if the cancer has "self destructed".  I am now back on the surgical route.

Yes, telling the kids is really hard.  I remember it well.  I decided to be very open about it all with everyone.  As you go through the treatment try to remember that the person who is probably most affected is your wife.  She has little control over what is happening and is "just there for the ride" to support you.  It can be really hard for her.

Also I totally get that you are "detached" it is how I feel.  All of us cope in different ways. I feel calm and sometimes worry that I am too calm about it all, but it is just my way.  You will cope in a way that suits you; and it does not feel that you are in denial, just managing your emotions the way you need to.

It is good that you have an HPV cancer as that is well managed by the treatments.  Let us know how you get on.

Hi Graham

Welcome to the forum but sorry that you have found yourself here. It is certainly a shock when you have been perfectly healthy and then all of a sudden get a diagnosis of cancer. I found it took a bit of processing as well.

They say that head and neck cancers when caught early are very treatable so that is one good thing.

It is great that you have a supportive family to give you backup as that makes such a big difference.

I am 17 months post my operation and 14 months post radiotherapy and am feeling well and managing most of the things I used to do before. The journey can be rather tough but the outcome is worth it.

Good luck with your operation and follow up treatment.

Lyn

Hi Julie

Good luck with your operation on Wed.

Lyn

Hi Graham and welcome from me too. Not much to add to the others for now. Your cancer being HPV + is eminently sensitive to radiotherapy and cure rates are exceedingly high. I'm a 2+ year survivor of similar and living well. I have a grown up daughter who lives in Germany and telling her via Skype was very hard. I kept it from her till I was on the cusp of treatment. 

If you do as your team tells you, don't fight what your body is telling you and let your wife look after you everything will be fine. 

We get a lot of partners/carers of patients here on the forum and many of them say how hard it is on them, trying to be helpful and useful so my advice would be to lean on her and let her be that rock. My Husband was my rock. still is and always will be and that is something to treasure.

You've said your boys are 12 and 17. Just a quick word about HPV vaccination. I know you probably won't be thinking about this but it's worth mentioning and forgive me if I'm posting out of turn but your younger lad will be in the existing scheme but your older one might have missed out but is still eligible for catch-up so it might be worth approaching the GP for him to have the jab too.

All the best and keep in touch with us all

Interesting what you have said about the HPV vaccine Dani, I was looking the other day as my 15 year old son just missed it, am 100% going to make sure he gets it. Free on the NHS until you are 25 apparently

Yes so go for it. I think it's licensed up to 45....Phil salar1 will correct me hopefully 

The argument against late vaccination is that you have probably encountered the virus already but on the other hand maybe not.......

I have paid for my 34 year old daughter to have it.

Also there is the issue of viral persistence causing more cancer? There is an immunotherapy trial ongoing that has Cemiplimab partnered with HPV vaccine... But I haven't much information on it. Is there any point in any of us P16 positives in having the vaccine?

EDIT....ah just found some info. It's not a prophylactic vaccine but a therapeutic one. I think one of our forum members is on the trial.

Excuse my ramblings

You’re absolutely spot on Dani re HPV vaccine. Encourage everyone to go for it. One of my past mentors on this site had a huge influence on getting the NHS mindset on vaccination for boys reviewed and changed. Take a bow David, aka Cymru123.

cannot be promoted or endorsed often enough!

Indeed. Worth having a look at his blog too 

community.macmillan.org.uk/.../a_journey_through_throat_cancer

Hi Graham welcome to our small community and sorry you find yourself here. I too had tonsillar cancer with several affected lymph nodes HPV 16 plus 35 radiotherapy sessions and 2 chemo. The treatment s hard but if I can do it anyone can. 
yes telling family is hard but you’ve done it. 

ifcwe can tell just ask I’ve a blog details below of might help you  and your  wife or family friends to see what treatment was like for me.  Any questions please shout out 

Hazel x