Referral for tongue biopsy

  • 89 replies
  • 154 subscribers
  • 2975 views

Hello you lovely people, 

I'm a 52 year old single dad of young twins.

Yesterday, my dentist said he was referring me for a biopsy of the apparent ulcer on my tongue.

This came as quite a shock.

For about 5 months, I'd had sharp teeth irritating my tongue and mouth.

Eventually, I went to the dentist. Never even considered anything sinister.

A month ago, he filed down one sharp tooth and scheduled a follow up appointment.

At this new appointment yesterday, he filed down the other sharp tooth I'd identified, then talked about the referral.

He said my ulcer was "quite large" and hadn't healed in the way he'd expect.

Ever since that moment, I've found myself almost frozen with fear, as if I've actually received a diagnosis of mouth cancer.

Which I know I haven't, but what I do for a living (as a writer) involves imagining worst case scenarios. Really doesn't help.

Neither was a GP especially helpful when I went to see her yesterday afternoon. She couldn't give me any perspective, or any odds, or any reassurance really, apart from to say it was "promising" (I think that's the word she used) that the lump on the side of my tongue hasn't bled and is painful. 

She also made vaguely positive noises when I told her I have what might be lichen planus elsewhere on my body.

Really glad to arrive here to chat with people who've been where I suddenly find myself now.

Looking through some of the posts, I can already see people in my exact position and it makes me feel less neurotic. 

I can't decide whether this thing being on my tongue makes it better or worse. After all, I can SEE it. I'm looking at this thing and wondering if it's cancer.

I'm just still at the point where I'm tearing up at the thought of having to leave my six-year-olds behind. This can't happen. 

Tomorrow, they're coming to stay for the weekend, so I need to pull myself together. Thought I'd come on here and also allow myself one day of worry and self-indulgent comfort food, ha!

Wine may also be involved.

If my situation once applied to you, or still does apply to you, how do/did you feel?

And did anyone decide to go private, to speed up the biopsy? If so, did it actually speed anything up, in your experience?

Right... I think that's more than long enough for a first post. Thanks for reading. :) :( :) :(

  • Hi  

    Welcome but sorry to see you here. You’ve had a look around and you’ve seen how worried people can get. It’s normal. Fear if the unknown and imagining worst case scenarios feed that fear. Unfortunately there is no easy way out. It’s just keeping busy to try to put the worry away for a while. The fact that 90% of referrals turn out to not be cancer may offer some comfort so try to hold onto that. 
    Oral cancer has a high cure rate so again something to hold on to. 


    And did anyone decide to go private, to speed up the biopsy? If so, did it actually speed anything up, in your experience?

    It’s something to consider if your referral appointment isn’t through in two weeks and a transfer to NHS for treatment is usually seamless. 
    Best of luck. If you need us there’s always somebody to talk to here. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Thanks so much for kind and welcoming words, Dani. 

    It would have been nice of the doctor to tell me that 90% statistic! Although I wonder if it goes down somewhat with an apparent ulcer like mine that doesn't seem to heal. Although in fairness I have had sharp teeth poking at it.

    It's really unfortunate that some symptoms are the same in tongue ulcers and tumours - for instance, the burning sensation. :( 

    Just so I'm clear, if you have a moment - is my actual appointment supposed to happen within two weeks, or am I supposed to receive word of the appointment within two weeks, with the appointment then being later than that? 

    I'm so sorry you have had base of tongue cancer. And at the same time, it's inspiring to see that your treatment finished over 6 years ago now. Go, you!

  • You should be on a two week referral so you should be seen in two weeks. Sadly it’s taking longer. I meant if havent had notice from the hospital in two weeks 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Hi Scared brighton boy ,

    A warm welcome to the group . As Dani has said you are in the really scary time of not knowing and sadly our anxious brains will always take us to the very worst of places. You said your a writer so I’m sure your imaginative brain is on overdrive, I’m a therapist and none of the breathing or calming exercises I live by helped a dot!! 

    Distraction is the key( far harder to to actually do) I like many others watched lots of films/documentaries and series’s on Netflix would take  a couple of episodes before it took my brain away from all the negative thoughts .

    Such a high percentage of people find out that’s it’s something else and NOT cancer. Those of us who are diagnosed with HPV driven cancers have over 90% success rate. 

    Try and enjoy the weekend with your wonderful twins , eat your favourite foods/drinks  and do the things that bring you joy.

    I had an exceptionally long wait( on the NHS and in retrospect wish I would have gone privately. Many hospitals are very good with  the urgent two week pathway.

    Best hopes and Fingers crossed

    Debbie

  • Sorry to hear that you find yourself here but welcome and best wishes for a quick turnaround with your appointments.  

  • Thank you so much, Debbie, for your lovely and helpful reply.

    How long did you actually have to wait for your own appointment?

    I'm already finding the not-knowing unbearable. It's 3am and I woke up with pain on my tongue, which I know could so easily be me just having bitten the ulcer on the side, or something more sinister. :( 

    Thank you for your great advice. I will do my best to follow it. That's reassuring about the survival rate of HPV driven cancer. I didn't know that - or indeed that they can isolate the cause like that.

    Tomorrow I think I'll look for more private options. But can you pay for a biopsy if you can't afford any subsequent treatment you might need - can you easily switch between private and NHS? 

  • Thank you so much for your kind welcome, Mick. It means a lot. BlushPunch

  • Thank you for your great advice. I will do my best to follow it. That's reassuring about the survival rate of HPV driven cancer. I didn't know that - or indeed that they can isolate the cause like that.

    Tomorrow I think I'll look for more private options. But can you pay for a biopsy if you can't afford any subsequent treatment you might need - can you easily switch between private and NHS? 

    Not Debbie but I will try to answer this 

    Most Oropharyngeal cancer is HPV positive and the biopsy is tested for it. HPV driven tumours are very sensitive to radiation. Oral tongue (rather than pharyngeal tongue at the back of your throat) isn't generally virus positive but the better news is that it is surgically very curative and any surgeon will tell you that is better than radiotherapy. So both ways the prognosis is good.

    You can pay for a biopsy, yes,  then be transferred to the NHS but there is little point and you may at that stage be wasting time. 

    The advantage in seeing a maxillofacial surgeon privately if your NHS referral is coming through slowly is that you would straightaway be put on their NHS list for further investigation.

    My appointment was slow coming through so I booked a private one but the NHS one came through quicker in the end.

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Hi welcome from me. Ti add what others have said keep off dr google. Enjoy your twins this weekend and chase appointment if you’ve not heard in 2 weeks. Remember 90% if referrals aren’t cancer. It’s the quickest way if bring seen it’s good your dentist is being pro active 

    Hazel ps not too much wine it will irritate the ulcer. ! 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • The advantage in seeing a maxillofacial surgeon privately if your NHS referral is coming through slowly is that you would straightaway be put on their NHS list for further investigation

    Thanks so much for the explanations, Dani!

    You've helped me realise that I don't understand how the NHS and private care interact. Thinking Could you tell me more about "their NHS list for further investigation"? When you say "their", do you mean the private surgeon? Thank you!