Really scared - Hand holding needed.

[Twirlwirlywoo]

Just back from GP to collect neck scan results. Enlarged thyroid (left lobe) with several nodules/masses. One mass 3cm diameter - quite sizeable. Off to hopsital this afternoon to see the ENT people - just coincidental thatmy appointment came through the same day I got my USS results.

Not been feeling terrific for 18 months. Generally feeling old and tired. Foggy headed, achey etc.

12 months ago my thyroid results came came borderline overactive but the follow up tests said I was normal. At the same time they found my ferritin was 7 (V low). Been on evil ferrous Sulphate ever since and my levels are now in the 20's but that is still low.

We moved house (200 miles) at start if year and about then I started to get problems swallowing food and a bit of reflux. I felt I had a hair/flap of skin or thick catarrh blocking my throat so took myself along to new GP.

Thyroid retested and the same results - borderline overactive initially but antibody?? test coming back normal. Referred for neck scan which I had done last week.

I am off to hospital this afternoon almost 30 miles away in a strange city I have never driven in before. I dont know how to get there at all - relying 100% blind on sat nav and have no idea what parking will be like or cost. I have no support here as I know absolutely no one here. Hubby is working away and so far has not even called me today to wish me luck - think he has forgotten as so busy with work. I am so scared and so alone. I am really frightened. I am trying to get a grip. I am frightend of driving there and more terrified of seeing what they say. I am worried about DD letting herself into our new house for the first time today (silly I know but my knickers are well and truely twisted - she is 13). My appointment is not until 3.45 and the letter says to allow 2 to 3 hours for the appointment.

tbh - I am frightened this maybe cancer.

Just pissed off, fed up and lonely. Been a bit fed up about living here for a while this is the final straw - having to face this alone with no one to support me at all!!

bigbadbuddy - sorry you are going through this too. Your problems do sound very similar to mine. I am 42.

I am guessing the FNA is Fine Needle Aspiration. That sounds like another joyous experience to look forward to then. The Dr mentioned one of those as well.

I am just going to have to wait and see what dates they send. I really dont want to have to go alone again. Its just knowing I can hop out the car if the parking is as bad (I am guessing it is from the conversations I overheard in the waiting room yesterday). Also although the drive was pretty straightforward it is all still new roads,new routes etc and on top of the worry etc I just don't fancy it. I am just hoping DH can be here. He is only home for 1 week in the next 4 though. I just don't know what I will do if I need something done that means I can't drive. My family is over 200 miles away and have holidays booked for May and June!

There is no point we stressing over that until I have dates though.

I am a bit calmer today. My tummy does still flip over a bit when I think too much but I am working hard at keeping busy. I think I will be OK until my next letter arrives with a date etc - then it will all become real again!

Please feel free to PM me bigbadbuddy if you wish to chat about this!

Thankyou as well to those of you who shared your barium swallow experience - it sounds pretty straightforward and not too stressful. I had visions of more cameras being shoved placed. But I can cope with a yukky drink and standing in front of an xray machine if that is all it is.

i know what you mean about driving, i hate driving anywhere i havent been before an spend the whole time worrying about how to get home.
I have read so much on google that terrified the life out of me but then i came to mumsnet and its mainly positive experiences and i think having the Fna and seeing whats going on made me a bit calmer. The dr said that there is a 90% chance its benign and that 40% of people with nodules have a normal thyroid function. I am sure my thyroid is not functioning normally (tiredness, weight gain) but i am also peri menapausal so basically i'm a mess! The Fna was bearable if you have one but i would have struggled with driving because i couldn't move my neck left and right, its fine today though.You may not need one though?

She did say they would take a tiny sample to go to hystology. She didnt elaborate. But I think they would do FNA before operating and taking a slice out.

I am hoping it can all be done on the same day next time I go. A 50 odd mile round trip everytime I go is something I could do without.

I had a thyroid biopsy too. Is is not bad but I was a bit bruised. They did use some local anaesthetic. The pressing feeling on my throat was the worse bit.
I drove home afterwards fine.

OP could you afford a taxi to take you there next time?

I may phone and enquire or look at trains and taxis. Although I am expecting it to be stupid money being that it is so far - it is nearly 30 miles each way.

hello bigbadbuddy sorry for late reply, been busy all day. hemithyroidectamy means half was taken out. i had left half removed.

twirlywirlywoo I went alone to the appointments and mostly by tube/bus but i don't remember much about the fna so would't know about driving. i'd get a train there and back if i was you then you can read a book and distract yourself. Ive just re read and I was assuming this was for fna but it looks like it's an op for a biopsy. Is that the same as the op for removal? - mine wasn't a same day thing, it was almost as long a stay as for csection - i think my biopsy was done on the whole lump after the op i think it was a 5cm nodule but not totally sure of that.

before my op I had to walk through westfield so I got myself some products to make my (3day?) stay a bit better. They let me out early, I was gutted.

i was convinced on each test that i'd come up with low results as i'm quite overweight and tired but unfortunately everything is normal, I'm just fat.

I had a fine needle biopsy just after Xmas. Discovered a large lump in my neck just before Xmas that had appeared quickly and had a scan within a week. I have a nodule with a large cyst. They were going to drain the cyst at the biopsy but it is a colloid cyst ( full of jelly) so it wasn't possible. The biopsy came back as benign ( most do) and consultant has put off surgery until I have more discomfort. It will have to be biopsied again in June as they like two benign results before leaving it, but surgeon said it will need removing eventually.
The biopsy was a little uncomfortable, sore rather than painful.
I had the camera down the nose at the initial consult and that was far more painful.
The cyst I have doesn't secrete thyroxine so my bloods are normal. Obviously if you have overactive symptoms then surgery is much more likely.

manechanger, thank you, i understand now, is there a reason they did that if your bloods came back normal?

Willdoitinaminute - do you have any other symptoms with the lump? mine is pressing on my thorax, it drives me mad, have they said it could get bigger or that it could disapear over time?

hi, they offered me a choice. because it was large cancer could develop in any part of it but the fna wouldn't show it because that's only testing one part of it. I could have continued to have fna's every 6 months to check cancer hadn't developed. I wanted not to have it hanging over me. The op was no big deal and i'm glad i had it out.

Thank you to all of you sharing your experiences. Overall they are positive really and are helping me.

DH has gone away again for the week and DC at school and I have started freaking out again this morning and been a bit tearful stressing out about the maybes.

The waiting is torture. I am trying my best to just carry on as normal but its nagging away in the background all the sodding time and I feel like my life is on hold.

This really is the straw that has broken the camels back for me. I didnt want to move here at all and I hate it. We had to move with DH job and we will be moving again before the end of the year. Trying to carry on as normal is hard because I have not found normal since we moved here 3 months ago. I have too much spare time and am struggling to keep my mind occupied.

Sorry for the woe is me post this morning I am hoping my mood will lift as I am taking myself for a walk (the very secenic route) to the local shop in minute as it is a beautiful day here.

thats how i felt too - like life was on hold - i really sympathise. i really found that being tired didn't help me (DS was 9 months when i had the lump out so I had a young baby during the 8 month build up). I started to go to bed at the same time as the kids. WAlking outside also helped but having the bloody thing taken out solved it for good!

sounds like you are in limbo in the rest of your life with a recent move and an impending one - that's very unsettling too. can you do some zumba/pilates or something? I am managing a building project and have had 12 years of at least one child at home, I have so many ideas for how to use spare time once ds goes to school, I'm on the other side of the coin!! (but I realise not with a health scare hanging over me)

Well I have my date for the Barium Swallow - next Wednesday.

I have just twigged at how long all this likely to drag on. I will then have to wait for an appointment to chat about the results of this and then from there another appointment to do whatever they decided to do like FNA etc.

Am just so sick of the waiting. Its a constant battle to keep my mind occupied by other things.

Still at least I only have to wait until next Wednesday for the next stage in all this. That is quick by NHS standards!

A quick hand hold, and no experience in this but I just had a thought can you post up a note in the local forum or even on chat to ask if any MNs live near the hospital in Peterborough and you could park on their drive and walk/taxi the rest? It's got to be worth a shot and at least would be one less worry.

Good luck Twirl. Try not to worry about the BS. it's really no problem at all. I understand your fears / thoughts about how long the process is though, it's so hard to not let your health occupy every thought.
I've had unexplained abdo pains for 9 years now, it's been a lot lot worse in the last year with many hospital appointments & several admissions. It's so hard to not let it take over your life, especially when every person you meet asks 'and what's happening with your health?' as soon as they meet you.
I hope you can get this sorted quickly.

So I had my barium Swallow almost 2 weeks ago.

Last week I chased the results (as advised by GP). Consultants secretary said my name rang a bell with her and she would see what was going on. She called me back to say the results had been delayed getting to them but they had them now and were sat on consultants desk waiting consultants review.

So today I get a letter from the hospital saying they have been unable to contact me by phone so have made me an appointment for 6 weeks time (end of June)!! Also new appointment is with a different consultant this time.

I have called new consultants secretary and left a message explaining I had no idea they have been trying to call me (I have no missed calls from anyone including with-held numbers) and leaving my contact details requesting a call back.

So I am concerned they have been trying to call me.

I am annoyed that as an urgent case I now have to wait until end of June to get results (especially as cancer has been vaguely touched on) but on the plus side I am thinking - YAY - must be good(ish) news if they are happy to leave me 8 weeks between investigations and discussion.

The last consultant I saw said she may decide to do a FNA. No mention of that now. Just feel in limbo.

GP said she will be the last to know anything - it takes 12 weeks on average for them to get any feedback, so I will usually know before her, but she did say she would call me in if she gets any news back. GP is fab,seems very interested in my case and genuinely seems to want to know the ins and outs.

So as well as all this I have been feeling pretty rough inbetween being OKish. My neck and throat is throbbing away. Food is getting stuck. The neck swelling is obviously visable on the left side now,and I know thats not just me because some one asked what had I done to my neck! When I lie down at night I feel like my breathing is restricted. Ontop of this I get woolly head,tiredness aches and pains and generally feeling like I am an real old lady and not 42.

Just venting really and because DH is away yet again and I am getting all worked up about why the hospital tried to phoned me.