Got more info today

Hi Rowan - really sorry you’re having to deal with this. Having cancer sucks!

I did not tell my family for ages - I just didn’t feel up to having that discussion with them or dealing with their reactions. After I’d started treatment and had a plan in place I suddenly felt in a better place and gave them a ring.

Importantly I had a partner and some very close friends for support. If you need the support of family, in my experience they’ll want to know and help. But don’t feel pressured to ‘do the right thing’ - do what’s best for you at the moment. 

whether HPV or not, try and focus on the positives and it sounds like your consultant is positive. 

I also worried about genetics as there’s a lot cancer in my family. Talk to your consultant - but when I asked they said there weren’t any links between HNC and other cancers.

Right. Modern treatment for oropharyngeal cancer has a high success rate whether you are HPV positive or negative so hold onto that. Don’t believe everything you read in the internet. Admittedly recurrence rate is higher but even so cure rates are good. 
Do ask whether your HPV status was decided by P16 staining ( which is the usual easier and cheaper test) or by finding HPV DNA. DNA testing is not routinely done.  Some cancers are P16 negative but HPV positive. 
Ask your oncologist what the chances of hereditability are but I think they are insignificant 
Have you been given a treatment plan yet? 

I am glad to hear that it's a valid reason to not contact family at this stage. It depends on the family but mine can be very intrusive and react strongly and managing this, just thinking about it, is very stressful. 

My partner has a better relationship with his family and he's told them about the situation and it's like an ongoing Q&A, even if they mean well, also with a lot of assumptions that need explaining. 

I hate the feeling of owing someone something despite my own situation. 

My partner is very supportive, though he is shocked and so are the friends who know of this. 

I am glad you are in a better place now. 

I definitely need to restrict my internet use, I already have but the temptation is there every time I hear something new. 

My consultant and Specialist nurse are both lovely, I have the feeling they are like me, and dealing with new information with every new test and new surgery. 

The current plan is to confirm N? and M? in January. We have decided on the neck dissection and there is some anticipation I feel because the dysplasia that surrounded the tumour (I think I was wrong previously, it's around 3.4mmx2.5mm) they are a bit more cautious. 

The plan seems to be if 2 nodes have cancer cells, RT. If 3, then RT and Chemo. 

Of course I am hoping for the best but hope scares me too. 

That is why I feel i need something logical that I can understand and work on but the only thing I seem to be able to do is wait. Nothing I do makes a difference. 

I think in the initial biopsy there was a negative HPV16 stain but I am not sure of the second. I shall ask that. Thank you for this, I wouldn't know all the right questions myself. 

Rowan21 said:

and it's like an ongoing Q&A, even if they mean well, also with a lot of assumptions that need explaining. 

I hate the feeling of owing someone something despite my own situation. 

Exactly me. I made the decision to have just my husband involved. He did tell his two daughters but asked for our privacy. My daughter lives in Berlin and I told her only when I had started treatment. I’m a private person. I stayed quietly at home. We are lucky we live on a smallholding so I had plenty of space 

In recovery I printed copies of this article about recovery 

https://workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

and gave it to friends and family

The number of people who thought I was fit the moment I finished treatment drove me insane. 

Rowan21 said:

Nothing I do makes a difference. 

No and that’s hard. But getting yourself fit and keeping your weight up in treatment will make for the best and easiest recovery. 

My family are of an ethnic background too and don't speak English. My partners family are in Germany too actually, and they have their own set of questions and assumptions. 

Right now I don't fully understand the concept myself, I will definitely check out your link about recovery. 

Between surgeries ince the pain is gone I feel ok, so it still feels surreal that I have cancer.

My colleagues who don't know have not said anything although the tongue surgery has made me sound different and not always very clear. 

I could but I don't want to tell the whole story. 

Weirdly although in between surgeries I struggled to eat or have appetite my weight seems the same. But I think this will change depending in the next news. 

I am applying lotion on my neck religiously as if that helped with the neck dissection. 

Rowan21 said:

I could but I don't want to tell the whole story. 

No don't. It’s what you are comfortable with. This is a safe space to chat with others who have walked the same walk. We all understand. We all prop each other up. 

Rowan21 said:

Of course I am hoping for the best but hope scares me too. 

There is a charity called young tongues catering especially for young people with tongue cancer. You could check them out too. They do have a very active private social media group. I can’t link it here but I can link their website where you will find out how to join. 

https://www.youngtonguesglobal.com/