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Anyone out there ENT referral 2ww - very scared

31 Aug 2019 00:48

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 

Anyone out there ENT referral 2ww - very scared

31 Aug 2019 09:38 in response to chloeb82

Hello Chloe,

I’m so sorry you’re going through this.

i had an itch all over my body, night sweats and then had a lump come up on my neck. Did they say whether they are doing a fine needle aspiration or surgical biopsy?

 

the tests can take quite a while - I’m not going to lie! Took two weeks for my ultrasound. Then I had to have a surgical biopsy.

 

i hope yours is more positive, mine was found to be Hodgkin’s lymphoma. Please try not worry about it - I know that’s hard to say because that’s all you’ll do. 

Hope everything goes okay for you!

Anyone out there ENT referral 2ww - very scared

31 Aug 2019 15:19 in response to Erlca92

I am down for one of these next week. Some thing showed up on my pet scan I had for lung cancer,That’s all I needed. They say mine is Laryngocele lesion.i like you are freaking out. Apparently it’s a pouch near my voice box. 

Anyone out there ENT referral 2ww - very scared

17 Sep 2019 20:14 in response to Erlca92

Hi

Thanks for the reply and I’m sorry to hear your results. 

I went on holiday for 2 weeks and came back to find the following are booked for me over the next 2 weeks:

 

- MRI scan with some kind of dye

- Fine needle aspiration biopsy for lymph nodes 

- surgical biopsy for “mass” at back of the nose 

 

How long did it take for you to get results? I just want it all over with - the not knowing and waiting is just awful.

 

chloe 

 

Anyone out there ENT referral 2ww - very scared

17 Sep 2019 20:15 in response to Billybags

Thanks for replying - means a lot! How did you get on? 

Anyone out there ENT referral 2ww - very scared

17 Sep 2019 23:03 in response to chloeb82

Hello Chloe, 

 

just be aware your fine needle aspiration and biopsy can be different. I Can’t talk for mri as I had PET scans and CTs.

 

also my biopsy was scheduled as an emergency so I got  the results in 10 days as they needed to start treatment asap.

hope it goes well for you!

Anyone out there ENT referral 2ww - very scared

20 Sep 2019 23:17 in response to chloeb82

Thinking of you chloe. How are you managing to hold it together? Whens your next appt? 

Anyone out there ENT referral 2ww - very scared

21 Sep 2019 08:08 in response to Smoore921

Hey, I’m ok... get waves of freaking out and then waves of calm. 

 

I have the MRI scan with a dye this afternoon and then biopsy under general anaesthetic on Tuesday. 

 

Then will just have to wait which is the worst bit!! 

Anyone out there ENT referral 2ww - very scared

21 Sep 2019 09:21 in response to chloeb82

Waiting is awful. Ive had swollen nodes in my neck, fever and chills for nearly 3 months now and am still waiting to see a hematologist. Its so hard not to panic! 

I hope today goes okay for you, I'm sure you will be glad to get these tests out of the way. Let us know how you get on. Hugs x

Anyone out there ENT referral 2ww - very scared

21 Sep 2019 17:46 in response to Smoore921

Whoa! 3 months?!! That must be so hard and horrible! I hope you’re doing ok. 

 

I had the MRI which wasn’t pleasant but was ok. Went on for 50 minutes! One thing I’m unsure of is do I have to call and get results or does the ENT doctor write to me?  

 

 

 

Anyone out there ENT referral 2ww - very scared

21 Sep 2019 22:18 in response to chloeb82

The doctor referred me under the 2ww but the hematologist down graded it to "urgent" which means I am meant to be seen in 8 weeks but they are running behind Sad 

Jeepers I didnt know MRI's lasted that long. That would be difficult! I'm unsure about results, hopefully someone else will comment that knows! Did they say how long it would take? Maybe ring the MRI department on monday and ask them? 

Anyone out there ENT referral 2ww - very scared

22 Sep 2019 20:37 in response to chloeb82

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. 

Anyone out there ENT referral 2ww - very scared

22 Sep 2019 21:55 in response to chloeb82

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. 

Anyone out there ENT referral 2ww - very scared

23 Sep 2019 19:44 in response to telemando

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 

Anyone out there ENT referral 2ww - very scared

23 Sep 2019 19:49 in response to ali61

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