Anyone out there ENT referral 2ww - very scared

Hi 

I had such a horrible experience today and its freaking me out.

  I’ve had a horrible rash for about a year that has progressively spread and got worse. About 6 weeks ago I noticed my lymph nodes were swollen so went to my GO. She said I needed an urgent 2 week referral to an ENT which in attended today. 

I went and the doctor felt my lymph nodes but said they are probably reactive nodes. Then she took me to another room and said she was going to put a camera up my nose and down my throat to have a look. When she did this, the pain was unbearable. It hurt so much and I started to physically shake, apparently went very pale and I thought I was fainting. Everything sounded like it was under water and the room felt like it was closing in. 

 

They gave me a a chocolate cake and tea (bonus!) and then said I would need a biopsy on my lymph node, an MRI, an ultrasound and a biopsy on a mass they found in my nose under a general anaesthetic. I am freaking out!! Everyone else has said that.the camera  up the nose wasn’t painful just uncomfortable but I had such an extreme reaction it has scared me!!

I guess I’m hoping someone else has experienced this before and can reassure me it is normal?

 

also does anyone know how long these tests will take? And how long it will take to get results ? 

 

Anything is appreciated

 

Chloe 

  • Hi Chloe 

    I’ve  just had same Mri with contrast dye on 21st too. Mine was 40 minutes long.  On 13th I saw an ENT consultant for a neck discomfort which my Endocrinologist had thought might be voice box problem. The ENT did the same camera up the nose procedure which I too found painful (no tea and cake though!). She said  my voice box was fine but I have 3 growths in ‘the space behind my nose’. One a cyst, one a hemangioma and one she doesn’t know what it is and so requested the Mri as urgent.  I was shocked and scared and didn’t take it all in as she said something about a biopsy under general anaesthetic in hospital, but I don’t know when.  My next appointment is 18th October but I’m wondering like you if I can be told the results earlier if I ring up. It’s all very scary isn’t it.  Do let us know how you get on. 

  • Hi chloeb82.

    Regarding the results, you will probably be called to see the consultant in a face to face consultation.  This is usual practice, and applies whether the news is good or bad. So don't assume that it's bad news just because you've been called for a consultation.  

    Sometimes you'll get a letter, but a consultation is more common. 

    For hospital blood test and MRI or CT results, your GP may be able to access these on their computer system.  For example, I had a CT scan just after Easter, and I was able to get the results from my GP when I made a routine visit on another matter two weeks later.   The CT didn't find cancer but did find something that needed to be referred to another specialist for an opinion!  However, in the end it turned out to be nothing to worry about.  In this case, the other specialist wrote me a couple of letters to keep me up to date with progress, and I never actually got to see him face to face. 

  • Hi Telemando 

     

    thanks so so much for replying, that’s put my mind at ease! I’d rather get a letter than have to chase them up! 

     

    Chloe 

  • Hi ali61

    sorry to hear you are going through this! It’s horrible and very scary. 

     

    For me, my understanding is that they will put me to sleep tomorrow, then put a similar camera thing up my nose (just like the painful one) and take  some cells from the “mass.” Then they kinda sear over the bit they’ve taken so it heals.  I don’t think it will be too bad although they said to expect some tenderness and possible bleeding for a day or so afterwards. 

    Will let you know how I get on once I come round tomorrow. Am planning on spending the afternoon on the sofa with tea and films! Hope you are ok, try and keep calm - I know it’s hard. I’m doing a lot of deep breathing! 

     

    Chloe 

  • Thank you Chloe and good luck for tomorrow.  Hope it isn’t too tender afterwards. Tea and sofa is definitely a very good idea! I’m torn between wanting to know the results of the mri and yet hoping they don’t call me in till my planned appointment next month! 

    Best wishes. 

    Ali 

  • Hi, I have the same symptoms, itching and night sweats, lump appeared on my neck, I have a hospital appointment today with ENT Consultant, very worried 

  • Hi Rosie,

    try not panic, I know that's a hard thing to do and don't use Dr Google!

    My advice would be try be as much of an advocate for your own care as possible. Tell them your concerns and make sure they work on them.

    My ENT just kept saying I was too young to get cancer, 7 months later he had to eat his own words.

    you'll do just fine, deep breaths, nothing you can do about the situation so try stay as calm as possible and the community here will be with you every step of the way if need be.

    Wishing you all the best!