Scared, worried and confused.

Hi MAJK 

None I’d us in here can diagnose we can only  tell you our experiences, in my case a pet Ct scan didn’t mean any cancer I had had spread it was to locate the primary cancer if at all possible which in my case was my right tonsil . The only thing I had prior to all this starting was a lump in my collar bone which I though I had pulled never in a million years did I think cancer ! But now I am 17 month post radiotherapy and living my life to the full. Best advise keep off dr google ,as my oncologist said to me if he wasn’t to go on he could disagree one himself dead in minutes! 

In my case it was ent appointment ,m r I scan, ct scan. Then pet cat scan don’t pre judge anything until yiuve been spoken to different hospitals have diffetent  ways if doing things , maybe ring up tomorrow to see when pet ct scan is . Each hospital will have what’s known as M D T. Meetings once a week when’re all drs get together to discuss patients scans and they like to have all info before them .hope this makes sense .

Come back on with any questions 

Hazel 

Thank you for coming back to me. It’s tough as I don’t know what’s going on. We’ve had no results back at all, but my dad is convinced they told him it was malignant before he had even had a biopsy (just by the consultant looking), so no one has actually confirmed anything, but the way they are doing things (i.e not having the PET scan before his outpatients app on Wed) is causing me to think that they’re sending him for that because they know he has cancer. I’m just confused as no one has said that word to us yet. 

I’m so happy that you’re living your life to the full! That’s music to my ears. I love the positivity people gave, it’s inspiring. 

Hi know where your dads coming from sometimes you just pick up the vibes from consultants ,just try not to worry easy for me to say I know 

Hazel x

Hi Majk

It's a worrying time but as has been said, try to stay off google as you will imagine all sorts of things.  At the minute it's a waiting game - one really good bit of advice we got from here was to get a notebook and write down all of your questions.  Make sure that someone goes with your Dad to his appointments as he will be told things and forget them by the time he steps out of the Consultants door.   Take the notebook, ask the questions and write the answers down when you are in there. My husband had tonsil cancer and the Consultant told him that it was cancer as soon as he looked at it, before he had had any scans or anything, but that's all he told him until the scans had been done and they had discussed the course of treatment.   He is now 18 months post treatment and doing well.  

Let us know how things go.

Thank you for messaging me. 

My Mum has been to the 1st and only appointment where we’ve seen someone and she said: 

1.They were treating it as malignant (not confirming obviously) 

2. Dr said he was probably frightening the life out of him. 

3. Dr also said he was “over egging the custard” but would rather do everything ha possibly could test wise. 

My Mum just has this very positive view and it’s a conflicting one (compared to my Dads one). 

That’s a great idea re: note pad. Thank you! 

I’m so pleased to hear he’s doing well? Do you mind me asking what treatment he had and for how long? 

Good evening MAJK, i was lucky in one in a way as my consultant told me on my first visit that he thought it was 99% cancer. It was quite a shock as for a start off I had never heard of "head or neck cancers, he said we will do a biopsy first and set updates for further scans. once the biopsy results came back he confirmed it was a cancerous tumour on the floor of the mouth area so to me it was not a shock as was half expecting this news from the initial visit. The M.R.I scan is used to take scans that will cover most of the top half of the body so they can see what is happening and where. The C.T scan is the one where they can inject a dye into the system so it highlights the scan making it easier to see the areas they are concentrating on ( i had this 11 years ago so relying on my memory a bit ). So these scans do not really say if its cancer as such they are just images or maps of the body. 

     As you can see I'm 11 years since my first operation and live a very good life and have adapted to my new way of life, must admit I'm looking forward to the Summer as I'm not keen on cold wet weather. Let's hope they manage to sort it all out for your dad, all the best, take care.

                                                                   Chris.

Thank you for your reply Chris. I really appreciate it!

Do you mind telling me if you felt well leading up to seeing the consultant? 

I’ve read your story and it’s pretty inspiring. You’re a brave man. You’ve been through so much and it makes you realise how amazing people are. 

Oh gosh yes! This weather is miserable isn’t it? Roll on the sunshine. 

Ashas been said we can’t make a diagnosis for you but looking at the chronology of your results it looks like the PET/CT is to look for another cancer but the likelihood is that they are looking for the primary in his throat. A heck of a lot of people who present with a painless lump in the neck have had it spread from somewhere else and often that somewhere else is very small so they go looking for it. 
This is the likely scenario. 
Most of us with neck lumps as the first sign have been perfectly well up to and beyond. 
it’s a real worry but it’s out if your control so you just have to wait it out. 
Your dad is in the care of some skilled and dedicated clinicians. 
Good luck. 

Thank you. It’s the waiting game that’s just so overwhelming! 

Appreciate the info you’ve provided. 

No worries MAJK, yes my journey was not the simplest but we got there in the end. I did not really feel unwell and was still working, but now I know a bit more about cancer the signs were there, which was tiredness and lack of appetite, in fact, even the family did not see anything wrong at the time but. As i have said before I had never heard of mouth/oral cancer so it was all very new to me. To be honest this was the first time in 48 years that I went to hospital as a patient, not a visitor.

   Looks as if it's going to be a miserable weekend weather-wise so I will be shoved in my workshop/garage . All the best, take care

                                                                    Chris x.