What to expect at first appointment?

Definitely ask if you can have someone with you. My consultant was happy for my wife to attend the main session with me - the one where I had my diagnosis confirmed and treatment plan outlined. It was invaluable as she did pick up things I missed. This was in January so peak covid so do check.

Thanks Hazel, hopefully it's nothing, and the big symptoms I have - swollen tongue and purple bruising - don't seem to be standard symptoms (from what I can google) so that's a good sign.  Really hoping that they do try and find out what it is instead if it's not. x

Thanks Freejay, I'm actually thinking I'll go alone.  I think I'll cope better with the stress without having to think about someone else.

Thanks Linda, just impatient to get to it now!  The wait is excruciating you're right...  hope that they give me some answers whatever it is.  It's good to be amongst people who understand, thanks x

Hi Leigh P21

I have had all tests including a biopsy just in last 2 weeks- They were very  challenging for me as I have anxiety - big style in a medical setting - but the staff were very understanding and really helped -

My choice was to ask my wife to come with me - it made evrything much easier for me and was a real help - There was no problems re Covid and having someone with you - They have recommended I take my wife for meeting.  

Also - if you are a bit stressed the other person can gather and remember more information, they can help you check in - find your way where to go etc - it was a godsend for me.  But we are all different - whatever suits you is best

Good luck with it

Steve

Steve

HI everyone,

I had my urgent cancer appointment today.  I'm really surprised by what happened.  I was seen by someone who must have been maxillofacial but basically I came in and sat in the dentist chair and she asked me a little bit about what I've experienced.  She then spent about 10 minutes talking about how stress affects the jaw and tongue.  

At this point I haven't even had my mask off.  She did do some checks on my jaw movements and looked inside my mouth (but like a dentist would. no scope or anything).  No endoscope. no checking of glands, nothing.  

She said something about how if you spot something it's easy to worry yourself about it and become really focused on it. I told her it's the opposite for me, I've been struggling for a year with this issue, and was surprised and worried by the referral but pleased to perhaps find some answers. 

When she did examine me she spent most of the time looking at my teeth and jaw and told ,me she couldn't see the bruise the GP had seen (2 weeks ago so maybe healed?) 

In the end I just burst into tears, all the stress getting here on an urgent referral and the worry and then not even being checked for anything.  Worst case scenario for me. 

I did keep trying to push her and ask does stress cause problems with swallowing, slurred speech, etc. and that I didn't think this was stress.  

In the end she said she would schedule a scan (I think MRI) which will happen in 3 weeks or so, so I'm hoping that if there's anything there it'll show up.  

I'm just so confused now, 

Try not to stress.
I know that’s difficult. I’m a retired vet. I knew the swelling at the back of my tongue was a SCC before I went to GP. The Maxfac consultant looked with a scope and said he couldn’t really see anything but normal circumvallate papillae. 

He scheduled an MRI which found it. 
If there is anything there the MRI will show it. 
Just chase up the scan if the appointment doesn’t come soon. 

Hi Dani, 

Thanks for responding to me and I'm sorry I didn't reply sooner - I got a call fro the MRI booking people the next morning and have my MRI booked for tomorrow (Weds).  The woman booking the scan was very apologetic that it wasn't any sooner!  So I guess they did put it through as urgent.  I've been trying to stay distracted with other things, and it's kind of helped! 

Good luck. It’s a very noisy scan and it does take a while so wear something comfortable and warm. You’ll get contrast so make sure you are nice and hydrated so that your veins are easily found. Let us know how you get on xx

Thanks Dani, I've had a couple of head MRI's before, and weirdly I find the noise relaxing! Usually fall asleep...