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Hello everyone,

I have just been diagnosed with tongue cancer today (26th Sept 2017) and it's the first time I've had cancer.

The lump is on the right underside of my tongue. I thought it was an ulcer but there are white patches on it. Went to see my GP who referred me to Durham hospital to see a Doctor from Sunderland hospital. The Doctor quickly got me another appointment to have a biopsy and asked for a CT scan of my neck and chest to be arranged. I went back to Durham 2 days later for the biopsy and went to Bishop Auckland hospital a week later for the CT scan. I had to wait 3 weeks to see the Sunderland Doctor at Durham hospital and it was agony waiting that long!

Today was the day I had the results of my biopsy and CT scan. The biopsy showed cancerous cells. The CT scan of my neck and chest came back clear (thank goodness). The Doctor said my consultant Doctor will meet a team and I have to be there too, for them to decide what treatment I will be having and what stages the cancer is in (this is what I don't understand - I thought the biopsy would tell them what stage the cancer is in???). I was told that they will remove the lump but I'm not sure how much of it they will remove. Also was told my gland may be removed too.

I am so gutted that I have this disease which could potentially come back again because I have HPV and a very weak immune system!!
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Hi Spooky,
very sorry to hear of your diagnosis.
Hopefully you won't have to wait so long now for surgery - it's very early stages atm. If you feel you need chemical support (antidepressants etc) don't hesitate - it was of great help to me.

Good news that the ct scan hasn't shown anything. They may take out a neck lymph gland
to biopsy it during your surgery. Be reassured that it's not a difficult procedure. They may remove more neck lymphs later (but hopefully it won't come to that).
Sometimes (depending on findings/biopsies etc) they may just resort to Radiotherapy. Just be sure you understand what they say they may have to do.

Don't worry about hpv - you have to concentrate on the problem you have now. Your diagnosis seems to have been caught early. I had my surgery october 2004 RT afterwards.Mine was caught late - well into my neck lymph nodes - but I am still here. You will do it too!

keep us informed - king regards - tony k
Last edited by tonyk 2
As tony says - keep looking forward, it's so scary where you are at the moment but many of us have been through this and have come out the other side. stay positive.

9 years since my first diagnosis. mine was a tumour on my tongue and had spread to my neck lymph nodes too. they may remove lymph nodes to check as tony says.

all the best

Thank you Tony and Gordon for your replies. Sorry it's taken me a while to reply back.

Three weeks ago I went on my holiday to Disneyland, Paris for a few days with my friend.

Two weeks ago, on the 6th November, I had my pre-op assessment at Sunderland Royal hospital. On the 7th November I was admitted into Sunderland Royal where I had the dye injected into my tongue for the scan to take pictures of my tongue - possibly to see how far the tumour goes inwards in my tongue. On the 8th November I had the laser operation plus they took out some sentinel nodes for biopsy.

I still have some swelling on my tongue and the right side of the tongue is still numb. Not sure if the feeling will ever come back. I also have a nice scar on the right side of my neck and it feels tight. Under my right jaw/top of neck feels numb. I have excruciating pain in right ear, going upwards the side of head and outwards to the back of my head (a bit).

Haven't been able to eat solid food due to the swollen tongue but I have concerns that I may bite my tongue when I try to chew food and knowing the right side of tongue is numb, I may hurt myself and not feel it.

Seeing consultant this Friday for a follow up to see how I'm getting on. Will tell him about the excruciating pain and discuss about my numb tongue.

Hope you both are okay and keeping well xx

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