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.

 

 

Parents
  • I cant offer any experience but I have been referred to ENT by. my doctor today due to abnormal swelling around my left tonsil area.  I had ongoing throat irritation in the new year,  a course of antibiotics did nothing to help .. 

    I have my fingers crossed all will be okay for you today and your diagnosis will be much of nothing or easily rectified. 

     

     

  • Thank you for your reply. I've had a friend with swellings on their tonsils, which turned out to be harmless cysts. So I guess a lump in that area isn't always as bad as it seems.

    My issue is a little lower down. Tried looking with a torch, but its somewhere near base of tongue or slightly lower I think, so couldn't see it. Probably best I don't see it. I did a week of antibiotics for something else coincidentelly. Did nothing for my issue either.

    Preparing for the worse today. Not sure how you do that. I feel tired, weak and worried all a the same time. Trying also to tell myself that perhaps ignorance, at least for the next few hours, is bliss.

  • My symptoms change daily .. I think my mouth aches from gaping in the mirror any given moment looking for more change.   Today my throat is dry and i feel like there is a dry patch when i swallow that oddly catches. Issues with the mouth seem so hard to pin point and are deceiving .  The left side of my throat is not symetrical at all.. the fleshy arch to the left of the uvula is not the same as the right .  The right side of my throat is totally normal . 

    Please do let me know how it goes.  One thing I notice on forums , so many people post but dont ever update and leave so many wondering, is their silence because all was okay or was it bad news that is best left unsaid..  uff! Ignorance certainly is bliss and i have such a huge fear of hospitals but will have to grin and bear what comes ahead..  

     

     

  • Hi. I will update later or tomorrow.

    My uvulva is not symmetrical either. I know all about this area, because I've had swallowing issues for years. In the beginning they suspected it was motor neurone disease and I went delerious with worry. Started noticing tongue tremours, sagging uvulva on one side etc.

    Told one ENT to take another look as the right side was much lower than left. He didn't seem concerned, probably because it moves properly when I yawn.

    Talking of yawning - doing it a lot since throat issues started.

    About a hundred tests later, and it was a false flag. Turned out I had a hereditary condition that can affect my esophagus. I think we're all inherantly non symmetrical!

    And even if I do come back on here later saying it looks like cancer, it doesn't mean yours is, don't forget. I have a lot of experience with examinations in the throat area to suspect my issue is serious. I really hope I'm wrong.

    Hate hospitals too. Haven't had a booster yet, so hoping I don't come out with bad news and covid (which I don't want again).

     

     

     

  • I had to research EDS - has this been a lifelong condition for you ?  I see it is extremely rare 

    Yes , I wont let others experiences sway my mind ! My mind does a good job on its own .  Lol 

    However , my thoughts and positive vibes are out for you today .. good luck 

     

    Jo
     

     

  • Oh , you had Covid - I havent as far as I know .  I have read so many things throat related that are possibly a result of post Covid or the vaccinations . I have been looking up what to expect during ENT appt and seems a camera up the nose is the standard procedure and I assume I wont be able to have anyone with me :(

  • Yes I had the Delta variant. Not nice But that was a year ago now.

    The camera up nose is not that bad from what I remember. Had it years ago several times. Just have to keep head still and not swallow, which I find hard at the best of times. I don't see why you couldn't have someone there with you. My wife has watched me go through all sort of procedures including that one. She will be there tonight.

    John

     

  • Was about to tell you about this other thread, but I think you've already spotted it as I can see you've posted there.

    We are the same age by the way - who'd have thunk it? ;-)

  • Oh haha ! Uncanny and yes I stumbled around here for a while

  • Will give details later, but all clear. No throat cancer. In fact no signs of anything thats causing my issues.

  • OMG - amazing news - so so chuffed for you ! Made my night 

  • Still coughed up the usual blob of bloody green mucus this morning though. Guess the problem is not in the throat but elsewhere!

     

    Be watching this thread to see how you get on. By the way they didn't let my wife in. I had to go in on my own due to covid restrictions.

Reply Children
  • Mmmm , so did the Doctor refer you to ENT based on what you are coughing up ? Did ENT suggest anything else to look into for that symptom?

    Yes , no doubt I will be lingering here in coming weeks.  I think my main symptom is post nasal drip and now i am wondering about deviated septum , my left nostril is completely  blocked at night when I lay in bed and my OH says i have  started to snore in past 4 weeks which i never did before :confused:

  • I have a deviated septum. ENT's love to point that out as if its something they really want to fix. Personally I don't notice it. My wife has issues with her nasal passages getting blocked, but uses and over the counter nasal spray which seems to work well.

    I've dealt with post nasal drip before. Check your bedroom temperature and humidity over night. Also make a diary of what you eat in the evening (particularly dairy based items). I have to prop myself up with pillows at night too, for other reasons, but worth a try.

    The ENT wasn't very interested if it wasn't anything he could see. He wanted me to see him again I suspect because of the horrendous private fee I had to pay on the way out. It was 3 times what I was expecting. Can't help but think the NHS queues would be shorter if these consultants didn't spend half their time in private appointments. I was sorry to have to do it this way, but under the circumstances I had no choice.

     

  • Well, I think maybe I am just clutching at straws and perhaps trying to find symptoms other than Cancer.  

    All i do know is i am constantly swallowing what feels like goop! Which on research is known as post nasal drip. When I press my right nostril in,  I struggle to inhale through my left nostril but can breath out through it a little better.  Never noticed this before but how can that just happen.  I am not blocked up with catarrh and I dont have a cold.   My throat is is swollen and red on the left side.  I  bought a humidifer at the weekend and have had that running when home with woodburner and heating is on.  I dont have heating on in the bedroom , I prefer it icy cold lol with window open but i bought another smalll diffiuser/humdifier whcih I have had running by the side of my bed for the past few days .

    I dont eat in the evening as i follow a keto style diet and have for a few years.   I have ordered a saline nasal spray and will start using that in left nostril later today when i get home .  

    My ENT appt seems to be very quick as the hospital rang me yesterday but i was at work and didnt pick up but they left a voice message ,  it simply said they were booking me and a letter with my appt was in post.  So wow! hosptial calling day after my doctor reffered.  Which oddly scares me even more .. lol ..

    I had no ideas that these NHS specialists were doing private assessments too.. this seems s a little crazy and as you say,  just adds to the choas of he NHS waiting lists .. 

     

     

  • Well, I had my ENT today .  The lump to my soft palate needs investigation so I am told a MRI scan will be next procedure followed by a biopsy of the lump under general anaesthetic within the next 6 weeks.. A long wait ahead to knowing what I am dealing with .  Specialist said no way of giving answers untill the other investigations are complete  - I cant help but think it is cancer

  • Sorry to hear you're going through this, the process I'm going through is very similar and I'm just awaiting my biopsy results and going crazy with anxiety and worry. How are you doing now?

  • Hi There

    I am now prepping for cancer treatment .  My results were squamous cell carcinoma, but I think I pretty much already knew my outcome from my own investugation .  I am not sure where your biopsy was but please do not take my result as a verdict for your own - 95% of biopsy in ENT are not  cancer I have watched and seen so many in my short time here come back with positive unrelated to cancer outcomes.   I know the wait is hell but as i say i reserached heavily so the shock was in essence not so  unexpected 

    x

    Jo

  • Oh gosh I'm so sorry to hear that

     I also have done my own investigations on my situation and from the signs I'm getting from the consultant - I don't have a lot of hope. 6 days to wait xxx
     

     

  • Oh I am sorry ! What area do you have problems with ? 6 Days can feel like a life time .. I know

  • 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 ️