ENT appointment - I suspect cancer of throat

I have Elhers Danlos Sydrome, which affects my esophagus, so am only on blended liquids and have been for about 10 years.
In January 2022 I developed pharangeal swallowing issues and soreness. Today as I write this I am about to go into a ENT appointment (actually in a few hours) in which I strongly suspect I will be diagnosed with cancer of the throat as soon as they take a look.

I have soreness in a specific spot on right hand side. Can feel a scab or roughness when I swallow. Have specs of blood in my spit - more so in the morning.

My last hope, though I think it is in vain, is that my coughing has cause some damage.

I am underweight due to my other health issues, so I am doubtful that any treatment would be offered. I have also noticed some more fatigue and headaches in the past 2 or 3 months. All bad signs I think.

So, in essence, I am about to find out if I am going to die a lot sooner than imagined.

My wife will be there with me, but has just lost her father to another sort of cancer, so this will be really hard on her.

Reaching out in there for any support of experiences that may give me some strength.

 

 

  • No, the consultant said nothing .  In fact my chap said to him 'what do you think it is" and he said there was  no way to tell until Biopsy .  
     

    I had a massive panic attack on the MRI day lol - what an idiot ,I knew it was not a painful procedure - i think it was the scanerio i was finding myself in ..   when i went for my biopsy the surgeon said she had seen the MRI scan and something waa definetly there and not right , that waa first real indication that things were not looking good .

     

    My PET scan is Thursday - nil by mouth for 6 hrs -but  lots water - I will be radioactive for 6 hrs after the scan

  • Big day for us both Thursday then! Wish we could fast forward!

  • Yes indeed, do keep me posted.  Not sure how long I will have to wait to hear of my results , I imagine they would only contact me if they do find spread..  

    Drop in here anytime if you have questions or need a distraction 

  • Thank you and the same to you of course. Have had an ok day to try distract myself but the gut wrenching feeling when you remember again is unbearable. Do you think I can ring the hospital on Monday and see if the consultant can tell me if it's good or bad over the phone before discussing Thursday? I don't know how I'm going to make it I really don't x

  • I know , its like waking from sleep  oblivious and then remembering what is going on in life , its cruel ! 

    I know all hospitals work in different ways so I would say nothing ventured , nothing gained and you could give it a try.  My consultant works over a vast area and works only certain days at certain hospitals so speaking to him any other day was never  possible as all my appts with him seemed to be on a Tueaday so what you need to remember Is if you do try on Monday and its not possible it doesnt mean its bad news,  it just isnt a possibility due to how your area functions . 
     

    You will make it through because you have to , I thought  the same way too ,  but seriously think about calling your doctor Monday too about your situation and asking for medication to help you get throiugh ! They will listen and help you. 

     

  • Yes I think that will be the case for my consultant too. But will give it a go and hope for the best! 
     

    I think I may have to ring the docs on Monday and give the medication a go. I suffer from health anxiety and have never wanted any medication in the past but I think I don't have much choice here. I'm going to make myself very ill if I carry on. 
     

    random question - did you have a swollen ulvula after your biopsy? I've had mine for almost 2 weeks now! Seems to be getting better each day but wow what an awful sensation it is! X

  • Absolutely, you can but try.

    Medication in my house only ever went as severe as Ibrupofen lol - i was a health junkie - i ran 5 days a week and swimming was a massive passion - i have done none since Feb , never did i think that would be the case for me. - but this has consumed me , more so before i got my diagnosis.   Asking for help to sleep and for anxiety was a big jump for me but i realsied i was being stupid to think i could cope without it - oddly knowing i have it there to take makes it easier and i dont reach for it everyday so think of  it as a back up and it will be there if you need it and you dont have to take it if you dont feel the need 

    My uvula does not feel affected but the area affected s literally bordering it ,but the biopsy site is so angry ,  sore and swollen I may not even notice or be able to differentiate  .  My soft palate is so swollen i struggle to even see my uvula now

    x

  • Oh I'm sure you will be back running and swimming in no time!! And good for you reaching out for help, I will follow in your steps. 
     

    I can't believe your biopsy site is still so swollen 6 weeks on! Did the consultants say anything about it when you went in? My biopsy was to the left of my ulvula just behind my left tonsil so I would have never have imagined the ulvula to be affected. I'm wondering if it's was all the tubes and cameras that were down my throat instead x

  • I know , 6 weeks on and it really does worry me and two consultants have seen it and all they say is it looks very sore and to keep taking painkilles every 4 hours ,  i have been doing this for weeks on end now but i cant keep taking painkillers like this and i try to avoid them until it becomes too painful .  I will repeat my conerns on Wednesday to the team I meet but my worry is it will be 'not their department' and i feel a little lost and abandoned on this constant battle 

    I see your point about the uvula too , as you say,  maybe repercussions form biopsy gadgets and as long as it shows improvement , then this is a good sign I am sure, if it  were deteriorating then I would think to worry  .  

     

    x
     

    I trend to worry about every little glitch now lol - i cough i worry , feel a lump when I swallow , I worry - I am constantly checking my neck for swollen lymph nodes -   i feel this is now moulding me into a very difderent me ! 
     

     

     

     

     

  • Have you had any anti biotics at all? I wonder if they would help. Which team is it you're meeting on Wednesday? 

    Another terrible night sleep tossing and turning with that gut wrenching feeling :cry:

    x