Struggling waiting diagnosis

OzStu said:

What sort of life changing issues has she.

Look at her profile. She is Sophie66 

She has had extensive surgery too. Her condition is not that similar to yours but I posted to illustrate that a good life can be had. 
She is not brave, she just gets on with it. She travels all over the place in Australia where she lives. Has parties at home and lives well  She us a stalwart of this forum too. 

I read her profile.  Incurable she said.  But still alive after 10 years and enjoying life in spite of everything.  And they are doing all these surgeries to restore her fuction and appearance along the way.  I'm fairly happy with my appearance from my surgery.  There is still some swelling and fluid but I look pretty good considering.  Certainly not the circus sideshow freak I was fearing.  Although more radiation my bring that about.  Most of the docs have soft peddled the truth to me,  but I do a lot of research and I have several indicators of poor survival going against me.  One is, p16 negative.  They other is the fact that it invaded jaw bone,  avioded detection for so long,  and spread to lymph nodes.  They other is that it had one node where the cancer ate though the wall of the node into surroundeing tissue.  This is why they say they have to do radiation,  there is a strong chance that there is cells that have travelled beyond the clear margins they got from surgery.  But,  they don't have a target.  They don't know where they may be exactly.  And because its a second time or rads to a previously irradiated area,  they can't do maximum curative dose.  My chance of permant cure if there is any cancer remaining,  is only 15%.  I asked him what time frame recurrence would like happen.  He said thee most common time would be from one year to 18 months,  but could be sooner or later.  I asked him what will be done at that point. He said they will try to cut it out if they can, but what typically happens is you will have another a few months later.  We will try immunotherapy but that has a very small success rate with this type cancer.  he added that I would die in one to two years after recurrences happen.  

He's the same chemo doctor I have five years ago, and I've found him to be totally straight up, honest and states the facts.  What he's told me I've confirmed with research of my own.  My feeling is that I'm totally screwed....probably anyway.

It's rubbish this disease. I have a friend who is still fairly OK after two years of chemo when immunotherapy failed. There are new immunotherapies coming on line plus personalised vaccines. I hope something good comes for you... Hugs

I wonder how many millions of people have died of cancer waiting for that new drug that would change their pronosis.  Five years ago I heard of people having immunotherapy for heaps of other cancers,  and how this cancer, the success rate was very, very low.  And what has changed in five years.......nothing.  The survial rate for this brand of cancer has not budged for decades.  So I have no reason to believe a magic pill is going to pop up all of a sudden to save  my arse

But hugs to you too.  xo

Hi I’ll just add I’m 7 years post chemo radiotherapy all I had was the classic presentation of a lump in my neck. By time of pet ct scan I had 7 lymph nodes involved. I was over in Spain happily cycling away with the lump there me thinking I had pulled a muscle but lo and behold HPV driven tonsil cancer which has a cure rate if over 90 %.  Take a notepad and couple of pens and don’t leave until you’re clear in yiur own mind if what’s been said. Your wife will be a huge help especially if she nags at yiu take heed. It’s not a time to be brave accept all help offered. 
hugs Hazel 

Totally agree Hazel.

As an aside, we're seeing Miss Farrer for the first ENT appointment this afternoon.  Is she ok,?

Hugs Gill xx 

OzStu said:

  So I have no reason to believe a magic pill is going to pop up all of a sudden to save  my arse

Maybe and maybe not. 
Is this any use to you? 

https://www.clatterbridgecc.nhs.uk/about-us/news/liverpool-team-recruits-first-uk-patient-personalised-therapeutic-cancer-vaccine-trial-could-transform-outcomes-people-head-neck

Yes, maybe, and maybe not, is the truth, the reality,  which can not be changed by my thoughts,  positive or negative,  that would be magic.  I'm am neither an optimist, or a pessimist,  I'm a realist.  i form opinions based as much as possible on evidence, whether I like it or not.  And I believe that it does no good to have a positive believe based on anything but evidence.  The evidence regarding my cancer at it's stage,  says it is more likely I will succumb to it and die.  Those are the hard facts.  I am better off knowing that, and accepting the reality of it rather then deluding myself that I will beat it,  no matter how shit the odds.  If the worst comes around, I will be better prepared to mentally and emotionally deal with it if I have expected it.   So my attitude is that I will do all I can to fight,  and hope for the best, and be prepared for the worst.  Maybe, and maybe not,  is the reality.

Thank you Hazel, I ain't brave so will definitely lean on my missus I just hope not too much for her sake.