Struggling waiting diagnosis

Ok so stats, wonderful things aren't they .. not. 

We wanted to know the prognosis. Its just the best way for us to deal with anything.

My husband was HPV negative ... stage 4 T4 in the tonsils, tongue and lymph nodes. He is 67. 

We asked our oncologist what the odds were and he said 60/40 ... although like yourself hubby googled everything and he got the 30% odds too. He thought he was a gonner tbh. Negative Nelly, I kept calling him. It was the most difficult times of our life. Something we've got through but wouldn't wish on our worst enemies.

Don't worry about long posts, you need to get it out, or you'll go mad. And you're right we totally get how you're feeling. Friends and family can be very supportive but I think unless you've gone through it you dont really understand just how absolutely terrifying it all is. And tbh it's as hard on the carers as it is the sufferers What time is your appt tomorrow ? Xxx

Sorry to hear you've had a bad night. Put ChatGPT away (take it off your phone) - only your medical team can give you the facts. We're 7 months along from when my husband found the lump in his neck & a really tough part was back in January & the unknown waiting for tests & results & a diagnosis. Your mind runs wild & on reflection we were both in proper shock at the time - not sleeping, walking around in a daze, I'd burst into tears in the middle of the supermarket. You feel so alone & as if you're the only ones in the World going though this. But you're not as everyone on here can testify. Stick on here.

I found that once we had a diagnosis you felt more in control. Everything then happens quickly & a treatment plan is put in place. My husband was 54 & otherwise fit & healthy like you which they said would stand him in good stead for the treatment. Try & occupy yourself & keep busy & remember 90% of lumps are not cancer but something else. We are off later today for results of 3 month post treatment scans to see if the treatment has worked ..... Back in January I couldn't even imagine this day. Best to you lovely. 

Thanks Debbie, I’m in at 8.30am. Normally appointments start at 9 but they asked if i could possibly come in at 8.30 so seem to be squeezing me in.

Ok Patrick, so looking for the positives here ... you'll find out early on. 

Do you have anyone going with you ? Xx

Good luck for tomorrow SpouseCare, we just got our final sign off Monday. Just duch a relief. Wishing the same for you xx

Hey Patrick.  Try to quit torturing yourself as you well realise it's doing no good at all.  I admit I did the same, constantly going down rabbit holes, looking at stats as to my fella's chances of surviving stage 4 advanced, etc. and all I came up with was that he had a zero survival rating and it was curtains.  It wasn't and he's still here.

Just hang on and wait until tomorrow; then you'll know for certain.  It's going to be a tough day but honestly, you'll cope as that's how we're programmed.  I got the news of my fella's cancer over the phone - totally different circumstances to your own, but the oncologist's words didn't crush me, they made me more determined to face everything head on.

We'll all be there, virtually, with you tomorrow and urging you to face whatever may come.  Sending strength and hugs xxx

Yes my wife will be with me. She is amazing, she has the strength I don’t have. We have a close knit neighbourhood where we live as a lot of the kids play together & she has confided in a couple of them for support but the way she is able to go outside & chat even though inside she is breaking is unreal to see. I tried going out with her yesterday evening but lasted about 5 mins, I did have a couple of normal conversations which did feel good.

Thanks Spouse Care & the very best of luck tomorrow.

Mack1 said:

Can I ask in general do people prefer to know the stage & prognosis?

Hi Patrick .

Yes and Yes. 
I didn’t want to go into this blind with fingers crossed ( my husband is like this and just plods on blindly…. He’s had a heart attack and refuses to change his lifestyle) 

I am medically qualified thigh not a doctor. I understand all the medical jargon. I have become an expert in my own cancer. 

As for your appointment brought forward, do t second guess. 
The likelihood is that a slot has opened up and been given to you. 
Good luck for tomorrow 

Mack1. I'm going to run you though what I've learned.  Lets assume the worst,  p16 negative,  stage 3 or 4, blah, blah, blah.  Ok,  the stats for cure if you have surgery alone, are about 30%.  That is confirmed by my own research, as well as what my own doctors have told me.   But, bare in mind,  that is derived from everybody that had surgury only, regardless of age or physical condition.  People with suppressed immune function from various conditions or meds they have to take have highter reates of relapse.  Probably the same reason the old do too.  Diabetics, etc, etc. If you are not in any of those groups your odds are better.  Now,  lets just give you 35% at least for being younger, healthier, and for giving up the smokes, and a lot of those people who relapsed didn't.   guilty here.  Ok,  your quiting totally and completely,  same with booze.  Alcohol shall  never go in your mouth again.  I reckon your up to 40%   Now, remember those odds are for surgury only, and they will recommend radiation and chemo too, and it will be a must have if they don't find the primary............can't cut it out if they can't locate it   With rads and chemo,  your going 55% at least.  Now,  recurrence that does happen with the group that have all three modes of treatment happens usually between 1 year and 2 years.  After that your odds improve.  And if it does happen,  there is still surgery for small tumors found early,  there is also immunotherapy with only results in cure for a small number but often slows in down, there is targeted therapies that can also kill off tumors but cant get rid of the loose cells that are around,  but all these things can keep you healthy for longer, and buy more time.  Then there is trials,  and improvements over that time.   Your worst case is that you are far from being screwed yet.   Yes,  very worriesome.  I have learned to make peace with the fact that I may be dying,  and I think that process has to start with acknowleging it and accepting it, while doing everyting in your power to prevent it.  Always remember this,  you will come to the day one day when you will be dying, or dead.......there is no way out of this life alive.   It was that way since you were born  Make peace and accept your motality............then fight as hard as you can to put it off for as long as you can.