Oral Biopsy

Hi Makkie,

I had my second biopsy/surgery almost 2 weeks ago. 

The first one was in September in a private facility (through work benefit, shorted waiting time) where the consultant said he wasn't sure what it is but will take a biopsy. They took a sample of the lesion on the right back aode of my tongue and 2 smaller samples from the base of my tongue near my throat. 

I got codeine, paracetamol and ibuprofen and some antibiotics that were optional. 

It took a week to heal and I was back at work (wfh desk work). The antibiotics and codeine made my stomach upset and drowsy. The pain went away within the week but speaking for long periods was hurtful. As it healed (full recovery on 2nd week) I could speak and eat normally. 

The biopsy results came back as moderate dysplasia with a recommendation to do a new biopsy. 

In between I had MRI, Ultrasound (both private) and CT (NHS). 

Second one was done through NHS as my private consultant said that's all he could do. My GP referred me as urgent after seeing the MRI scans which turned out to be misleading as they were taken after the first biopsy. The CT showed nothing but we knew the lesion was there and futher tests on the 1st biopsy now said it's severe dysplasia. 

During my second surgery there was more exploratory. They cut the rest of the lesion but also discovered a think part near the scar tissue from the first biopsy. They added dye to it and followed it and cut the area around it for the margins. 

This time I woke up feeling better and the NHS ward and nurses were absolutely amazing and looked after me well. I got to go home after 4h, same day. 

This time I wasn't given antibiotics as the area in the tongue apparently is not easily infected. This made me avoid the nausea and vomiting from last time. I also didn't take the codeine which made me very drowsy and most of the time the paracetamol and ibuprofen was sufficient. 

This time I am taking 2 weeks to get better. There were some bad days in between but I feel better than the fist time in general. 

I can speak mostly, things like letter R are difficult. I can eat but mainly on the side that wasn't impacted because it is difficult to use my right side of the tongue/mouth as it's still stiff. I hope this will be better at some point but I was told to expect numbness that won't go away in some parts. 

I am now 12 days post surgery on the tongue and physically I am okay, given the circumstances. 

They cut out all dysplasia and they found a small tumour which is out and the margins are clear. The next question are the nymph nodes. 

I am anxious about the next steps but I think that is normal. Everything has been done for me to get the best results and reassurance. 

I hope this gave you some idea of what to expect. Some days were unpleasant and some days I woke up feeling better than expected. The tongue itself seems very resilient. 

Good luck, I wish you all the best. 

Hi all,

Thank you all so much for your replies.

I had my appointment today and unfortunately have been given sad news.

I have early stages of tongue cancer. Although the consultant has informed me that there's a cure (85/90% cure rate) I am very very concerned and upset. I was wondering if there was anyone else on this board who has gone through this please? 

Thank you

Hi Mackie sorry to hear your news.  Do you know what the next stage of your plan is?

Thanks for your help.

The next stage is further diagnostics (CT/MRI Scan) just to be clear it hasn't spread, although the consultant said he couldn't feel anything in the lymph nodes etc, he is certain it is local to the tongue so has suggested surgery to remove the tissue.

You appear to be on the same path as I were two years ago.  Advised I had cancer of the tongue 28th December and scan on 6th January and face to face meeting with consultant on 20th January.  Day previous to.my surgery on 25th January had sentinel node biopsy was back home on 26th.  Hopefully your time frames will be the same as mine but christmas holidays may impact on schedule.  I know it is easy to say but try not to worry and keep away from Dr Google.  If you have any specific questions please reach out.  

Your path is very similar and what you have been through is re-assuring too. I can only thank you for sharing your personal diagnosis & recovery with us. Reading the full recovery of yours is re-assuring and I pray and hope that mine will also be the same.

I was supposed to be travelling abroad at the end of the month for 2 weeks but it is likely I will be cancelling the trip. 

What part of the country are you from? 

Manchester

I'm Sundeland.   Other things are coming to mind  - When I saw consultant a macmillan cancer  nurse  specialist (CNS) was present and was my point of contact.   On the day previous to my op I met the Speech and Language Therapist (SALT) who sked me to complete a questionnaire and carried out a swallow test.  The CNS was also there and they went through a checklist of questions covering medical, financial and spiritual needs.   As I say if you have any questions or just want to vent this is the place to go.  Best wishes Mick 

That happened in my appointment today, a specialist nurse was present and she shared some documents along with her contact details. I got a call today and I've been booked in for my further tests tomorrow. I hope it is localised and as the consultant has said himself, not spread. 

Should I wait until after my surgery and recovery before travelling abroad now? I don't know how fast the tongue cancer spreads.

Thanks