Hi Emma,

Oddly enough I have just logged on looking for support with a very similar situation.  I am still in the waiting zone unfortunately and its driving me nuts today, I cant concentrate.

I had an accidental thyroid discovery after they did an ultrasound to inspect a lump in my neck gland on one side.  It was graded as looking suspicious via ultrasound and they did an FNA now nearly three weeks ago.  I have called them a couple of times and today I have been given an appointment to discuss with a consultant.  This worries me because in my head if it was clear perhaps they would just send a letter?

Today I am very frustrated because of knowing I have to wait another 2 weeks (I found the original lumps in January) and that the consultant wants to discuss the findings with me.  I got quite upset at work but managed to escape for a walk before anyone noticed.  My logical brain is trying to say - dont read into the appointment and realistically if it was serious surely I would have had a quicker appointment.  But I know this is not neccessarily an indicator.

Any tips for the waiting?  I seem to have a flare up of being angry/ anxious/ stressed each time I get a new appointment through but then I seem to within a couple of weeks only have it at the back of my mind.  So right now I am in that stressed/ anxious cant sit still mode!

I am finding it quite hard to find support in the sense that I dont want to tell my family as to not worry them and friends my age dont really seem to understand or want to talk about it.  So I have kept it only to myself and a couple of people.  People get a bit awkward talking about these things, which is understandable I guess.

I hope your surgery goes well.

Hi Lola, 

I had my result appointment today after waiting 3 weeks since my FNA and CT scan so I can fully understand how nervous you must be feeling right now. I was the exact same as you, I was able to block it out right up until I had a new appointment come through.

My results confirm that I have multiple nodules around/on thyroid gland and although the FNA came back as “normal” they still can’t 100% tell me that it’s not cancer as there is one nodule in particular which has shown an increase in blood flow on every scan they’ve done which is causing concern and it’s luck of the draw as to which nodule the radiologist chose to take the cell from.  I’ve basically been told that I need surgery so they can determine once and for all whether I have a cancer or not and if so, the rest of my thyroid is getting removed. The consultant has reassured me that it’s unlikely to be cancer but the risk is still there. I feel relieved that there is a plan in place to get this sorted however it’s also a bit annoying that I don’t have a definite answer of what it is yet!

Always here to talk if you need to - sometimes it’s easier venting to a stranger and somebody that’s going through the same xxxx 

Hi RLJ0304,

I hope you are well.  Have they given you a waiting time or date for you operation?  This not knowing seems to be very difficult.

Hi Emma,

How are you doing?  Have you been given an appointment for your surgery?  I hope all is well.

I have my appointment today with the consultant to discuss the results.  I am nervous but also relieved that the date has now come where I might get some answers, seems like such a long time since I was told that I might have cancer.  I have a busy week so trying to concentrate on that rather than the appointment.  Its hard to maintain focus today.

xxx

Hey! I had my pre operation assessment last Friday - I am on the urgent list so I imagine I’ll receive a date for surgery anytime now. I’m kind of hoping it’ll be in January so I can enjoy Christmas as they’ve said the recovery can take up to 3 weeks, but they can’t promise me anything! How did your results go? Xxxx

Hi everyone 

Sorry I’ve not been on here much but I’ve been having a much needed break from worrying! 

This is my update... I went to discuss surgery with my consultant... but I ended up seeing one of his colleagues who wasn’t convinced I needed surgery so it was put to me that I have a second biopsy (though if I really wanted surgery I could still have it) this was the most awful experience, it was far worse than my 1st and they hit a blood vessel. Anyway less than a week later I got the result of benign! Yay! 

However because I’ve had 2 different sets of results they are scanning and biopsying my nodule every 3 months for a year... any changes to size or biopsy results and it will be removed.please keep your fingers crossed for me! 

I hope you are all well! 

Emma xxx

Further update

Latest FNA was inconclusive with cells showing a 5-50% of it being cancerous. I'm now booked in for a hemithyroidectomy in 2 weeks! I'm feeling so anxious! 

Has anyone else had this surgery? How can I expect to feel afterwards? 

Emma x

Hi Emma, 

I had this surgery 5 weeks ago. I stayed in for one night and was loving the morphine. I was able to drive a week after and am feeling ok. My scar is still swollen and tender- not sure if that’s normal. Feel free to message me with any questions you may have. 

With best wishes, sophie xxx 

Hello 

did you get your thyroid results?

im going through this now 

xx

Hello 

did you get your thyroid results?

im going through this now 

xx

Hi, 

Im also in a very similar situation and am terrified.

I desperately need some support. At the end of December I found a lump in my neck and went to the docs. They took bloods and referred me for an ultra sound. Blood tests showed high TSH 19.6 and low t4, compatible with primary hypothyroidism. Also have family history of hypothyroidism. Went for the US end of Jan and was told U4 single nodule, hypo echoic, solid and vascular 29mm. Since that day I have not been able to switch my brain off and am so scared of what is to come. I have a 9 month old baby. Referred on 2week wait and saw ENT. Went for FNA beginning of Feb which came back inconclusive. Went for core biopsy last week and now anxiously waiting results. I'm struggling to get through the days and can't stop thinking I have cancer

have you had Fna? 

Hi,

im also going through the same. How did you get on? I have a U4 and waiting for core results. First fna was inconclusive.

Hi,

I'm going through this too. How is your journey going? 

Hi, 

I am having my left thyroid removed as my biopsy come back inconclusive she has said it is U4 and they will operate soon as possible 

I am also having to have an MRI to check there are no other concerns before operating 

it's all a blur as I requested my results over the phone as they left a voicemail for face to face within 2 weeks but I was too worried waiting the nurse said there was no signs of cancer no concern 

so I attended my appointment and the doctor I spoke with couldn't have been any more concerned and told me it wasn't the case and there's a 10-30% chance it's cancer and being ranked U1-U5 I am u4, very stressed and seems like I am waiting forever for next appointment from endocrinologist and surgery date 

The odds are still that you don't have cancer. It's 70% - 90% that you don't. 

And even if you do, that just means they'd have to remove the other side of your thyroid. Of course, nobody wants any operation and not having a thyroid means having to take medication for life and I believe some people have difficulty getting the balance right (but those are a minority), but it is highly unlikely to be life-threatening or require ongoing treatment like chemotherapy or radiotherapy.

Honestly, only a small number of people (my mum, brother and sister, brother-in-law, my uncles and their families and about three colleagues) know that I had cancer. As far as everybody else is concerned I had my thyroid removed. This includes my closest friends. I just felt that mentioning cancer made it sound more worrying than it was and "having my thryoid removed" explained what I was actually getting done.

My endocrinologist mentioned "oh, we found malignancies" in a tone that was anything but concerned. He sounded almost bored and went on to say "ah, it's not the worst situation in the world."