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.

 

 

  • I had a mass behind my left tonsil and some swollen tissue at the back of my throat from post nasal drip. I went in for a biopsy and they removed it all! Been in agony ever since, and now had the face to face appointment through.

    the surgeon said to me before I left that in most cases you will get a phone appointment through to discuss the results but in cases where weird and wonderful things come back we will ask you to come into the clinic. So that's just playing in my mind. 
     

    how are you coping? X

  • In the end i waited 5 weeks for my biopsy results , by week three the consultnat told me it was cancer just from my MRI butbi had to wait another 2 weeks for patholody to confirm how deep the cancer had gone and if surgery would he necessary- i found out pnly this Tueaday , that i would not need surgery .. a small blessing 

    I am always here to chat if you need to ️

  • Oddly , I am slowly coming to terms with things .  I do have days where I get totallly overwhelmed but human nature I guess..  But now I just want to get treatment underway .

    I meet with radiology , dietitian and speech therapist Wednesday  and I have a PET scan Thursday to check for possible spread but they say they dont expect to find anything and it is just belts and braces procedures.but still another anxiety phase

    I too have been in agony since my biopsy - i had biopsy under GA and around 4 stitches in my soft palate , these all came away within 48hrs leaving  me with a freah open wound - when i called the hospital they told me due to the area nothing could be done without going back into theatre which was not an option , my biopsy  site is not healed all these weeks on - it hurts to speak and eat

     

     

     

  • Yes I can imagine - completely normal. Oh that's good you're not having to wait around to get started at least. Which area are you from if you don't mind me asking? 
     

    I had my biopsy under ga too - I didn't even get stitches! Just an open wound! Did you have yours over 6 weeks ago!? And still not healed???

  • Yes , it will be 6 weeks on Tuesday .. they took quite a large section and I dont think there was enough flesh left to bring it together and the soft palate moves all the time , when you swallow , drink , talk , yawn (which was excruciating) it simply isn't an area I can rest for it to bind back together ..unless I sleep for 3 weeks  

    I am in Gloucestershire but I think all results are given face to face at my ENT,  no matter what the outcome is 

  • Goodness that sounds horrendous! Hope you're managing to eat. It's awful with it all being mouth/throat related as there's no avoiding it. 
    im just about to start nibbling at my soggy cereal to try get something down ha! Wish me luck x

     

  • Oh dear haha ! I had ready brek for dinner lol but tbh I am finding the softer food goes where it shouldnt lol and is possibly causing me more aggravation- (without being too graphic.)  I treated myself to good old English fish and chips tonight and the biospy seems not as bad - a chip cant quite get through the wound lol - hopefully you have eaten your soggy cereal and i have not put you off

     

    Jo

  • Oh I know exactly what you mean haha! I'm missing tomato! Tried a sip of apple juice today and felt like my throat was being ripped open. And they recommended apple juice in the early days to soothe!? 

  • If you don't mind me asking jo - did they allow you to bring someone with you for your results?

  • Oooh , try honey ! In tea etc it is supposed to be a great natural healer - I was buying manuka honey but yikes it is expensive but tbh i think normal honey is just as good ! It is said to sooth and heal .  I was using it before my biopsy just to sooth my throat and you cant beat plain boiled water with diluted salt as a quick mouth rinse and gargle - totally grim to taste but amazing how much it calms down aggravation - i had to have two teeth removed last week in preperation for radiotherapy and it really does speed up healing and soothes - my sister is a dental hygienist and she swears by simple salt water rinses and i can confirm it helps massively and iit is a cheap and cheerful too .