Worried

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Hello, 

I’m not too sure what I’m looking for really but perhaps just needed to write my thoughts down. 

I’m very worried that I have tongue/throat/tonsil cancer. 

I must caveat this information to say that I’m currently feeling very unwell, as I have pneumonia and a sinus infection and on day 3 of strong antibiotics. 


Anyway, here goes:

I started with one sided ear pain months and months ago. I saw a GP who said it was likely Eustachian tube dysfunction. It has progressively got worse, it used to just cause issues when laying down in bed at night but now I’m getting a lot more pain, it feels full and my tinnitus (which I’ve had for 20+ years) is worse in that ear. I’ve also seen an audiologist who tested my hearing and said both ears were the same, and I don’t have a wax issue so said perhaps EDT as well.

I then started with tongue symptoms. My tongue has a numb feeling. I have red and white patches on my tongue and white patches in front of both tonsils and at the back of my throat. I keep getting little canker type ulcers on my inside bottom lip, which appear and then go again. I can’t see any obvious growth but my tonsils are all pitted and weird anyway due to a bad bout of tonsillitis several years ago which led to them being necrotised. I did an econsult with the GP about this and they said they thought it was oral thrush (as I’d recently been given a steroid inhaler). However, I did the treatment for 14 days and although there were slight changes (not improvements as red & white patches came and went and then came again) my tongue still has the above symptoms. I’ve been back in touch with them and they’ve prescribed a different type of anti fungal. 

Underneath my ears (my bad one especially), I’m in pain. I can’t feel any specific lumps or lymph nodes as such but the area feels slightly swollen and tender. 

I feel a bit of a wreck in all honesty. I’m losing weight because I can’t eat. I know I’m fighting an infection so it would make sense that my lymph nodes would be swollen but I can’t get past the link between my ear pain and my tongue issues. 

I’m due to see my dentist on 6th January. 

I’m 47, haven’t ever smoked but I have been a heavy wine drinker. 

If you’ve read all of that then sending you a sincere thank you. 

Helen x

  • Dentist should be able to give you a good picture of what's going on in your mouth....he may refer you back to your GP for further investigation, which should maybe lead to an ENT referral.

    Peter

  • Hi 

    Sorry to hear how badly you are suffering. 
    You sound absolutely terrified and it seems your GP isn’t addressing your fears at all. 
    I think it’s time you insisted on a referral to ENT. If your GP is unwilling then the only recourse you have is to go privately 

    For the price  of a private consult you could either have your mind put at rest or start the ball rolling in getting things fixed. 

    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

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  • Thank you for your reply Dani. I appreciate it. I do feel so worried and feel like I’m being fobbed off. 

    You’re absolutely right about the private consult. I’ve just booked one now for 31st December so not too long to wait. 

    Helen x

  • Hi Helen, if you voice your concerns with your dentist they can get the ball rolling and refer you onto the pathway if they feel there is cause for concern.. I had blood tests with my GP that came back clear, but my dentist after noticing the swelling in my lymph nodes referred me there and then.. 

    Loz (61)

    Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive.. 

  • Hi there, I am new to commenting so I try my best. 

    When I was told my tongue needs investigating, the main question was always "can you eat?". Im my case I could which led to just following the generic time lines of referrals etc. 

    However I cannot help feeling if I had issues eating like you seem to do they would have taken it with more sense or urgency. 

    If you are concerned and hopefully it's nothing but I understand the need for answers and action to feel like you are taken care of, I would highlight this fact to your GP, dentist and anyone who would listen. 

    I think companies like Bupa or Aviva provide private GP consultations that cost two digits. A lot of it is virtual so they cannot help physically but they can write a letter with referral to push it along to the GP or even hospital directly (My Bupa consultant write to the NHS surgeon that I am seeing). 

    Of course it's worth verifying before putting your money in it. 

    Best of luck. 

  • Thank you for your reply. I think it is my anxiety and fear which is preventing me from eating. I’m not having any problems with swallowing. 

    I agree with you about the need for action. I’ve booked myself a private consultation with an ENT consultant surgeon for 31st December. 

    xx

  • I thought I’d replied to you straightaway once you’d posted but I’m not sure what happened to it. 

    Thank you for your reply Peter. I’ve actually booked a private ENT consultation with an ENT consultant surgeon who is also one of the NHS leads at a nearby hospital, which is on 31st December. 

  • Thanks Loz, I appreciate your response. As you’ll have probably seen in some of my replies to others, I’ve booked a private consultation on 31st December. 

  • Hi Helen. Fingers crossed for you. 

    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
  • Thank you all  so much for your messages. 

    I have to admit that I'm absolutely petrified. I've had another good look in my mouth tonight and I can see that the red patch at the left tip of my tongue has a small vein running to it on the underside of my tongue. This isn't something that I've noticed before. The two white patches in front of my tonsils also have thin veins running into them. I fear that this is really not good news. 

    I can't stop looking in my mouth and checking for changes. As the previous oral thrush medication didn't work, the GP prescribed a new gel, which has now been discontinued, so I will be put back onto the original treatment again.
    I keep feeling my neck and I keep thinking that I can feel something.

    I haven't eaten anything since Monday, as I'm so anxious. I can swallow, but I just can't face food.  

    I know I am getting ahead of myself here but could I have the HPV virus even if my smears have always been clear and HPV negative? 

    Helen x