Hi Emma,

I am in a very similar position at the moment however I am waiting for my biopsy results to come back. I had the biopsy done last Monday along with a CT scan. Having spoken to my consultants secretary, she’s advised that my CT results are back however the biopsy results are still with the lab (even though my radiologist at the time told me they’d be back within 4 days). They won’t tell me my CT results until I get my biopsy back so the consultant can paint a full picture which is understandable. 

I have lumps on both sides of my thyroid, the right coming in at 4mm. My consultant has told me he’s pretty certain I’ll need surgery in the near future but I’m not sure if they’ll remove the whole thyroid or not yet.

I have been told that it could be thyroid cancer from one doctor and the next isn’t so sure - so I’m really unsure what I am supposed to think - just trying to stay positive and block it out but I still haven’t got a results appointment booked which is frustrating!! I was told I must cancel a two week holiday for these tests and it’s been 8 weeks since my initial two week urgent referral. 

I feel frustrated for you that after a long two week wait your results have come back as inconclusive and you’re now having to weigh up the pros and cons of having surgery or opting for another biopsy. Hopefully you’ll figure it out and stay positive (easier said than done - I know!) 

xx 

Hi, i had a large nodule last year and my results came back as negative however due to the size I had half of my thyroid removed (it was approx 5cm but the operation was optional). Once removed over a year later they sent it to histology and today I was officially told that I have cancer. However it’s the best of bad news as the one I have is the most common which is easily and quickly curable and it is contained. Looks like I’ll need the remainder of my thyroid removed and possible radiaiodine treatment but this is being confirmed tomorrow when I go back. 

Im always available if you want to message me with any questions. It appears the waiting for results is the worst! I had to wait a month! X

hi. I'm new to this  about 8 month ago I found a lump by chance. I had blood tests and my thyroid hormone levels were all normal. had 3 ultrasounds  this revealed that I have a lot of cysts on my thyroid. 1 has grown from 1.5 cm to 4 in space of 3 month. I have also had a hemorrhage which the sonogropger was not worried about as said appears to have clotted. I had a biopsy 2 weeks ago and waiting on my results. why I'm so worried is that up until a few weeks ago the lump moved when I swallowed. now it does not and my neck feels tight and struggling to breathe.my endocrinologist doesn't sound keen to have me have it removed if it is benign which he thinks it is. but surely I should be given the choice as I have a very noticeable lump on my neck and it's causing some discomfort 

Hi,

If it's causing you to struggle to breathe then I'd be looking to get it removed even if it is benign. Did you mention the breathing difficulty to your endo?

yes, it's worse when I lie down, he said the surgery is very complex and will leave a 'nasty looking scar and will possibly have to take thyroxine medication for life. that doesn't bother me at all. he didn't sound keen at all. my worry is why my neck is starting to feel tight and the lump does not move up and down when I swallow, when it did so only a few weeks ago. waiting on my results feels like an eternity! they said should be back in a week and it has now been 2 weeks 

Possibly its grown so big it's pressing on your airway?

Did he say why he's not keen to remove it?

No harm to get a 2nd opinion if you're not happy. 

he said wait see what biopsy results show. feels like forever! hopefully I will get letter by next week 

Hi Bardon, 

I'm in a similar position to you. They found a 3.2cm nodules in right side of thyroid and fine needle byopsy came bk as inconclusive finding follicular cells. I had my right lobe removed just over 4 weeks ago and have an appointment tomorrow to discus results. I am hoping I don't need another operation as thyroid is working fine. Can I ask what type of cancer did they find? Can't stop thinking bout it

Hi, 

ive been having tests on my nodule for nearly a year now. 

The first biopsy came back inconclusive (they didn't get enough cell) 

So then I had a nuc med scan to rule out if it was cancer or not .... 

the results came back neither cancer or no cancer so I was advised to get another biopsy . 

I had the biopsy and apparently again it come back inbetween cancer and no cancer so I need surgery to have half nodule removed . 

I keep going over it in my head and think ... is that the only option ???!  Like can't they do it again , is the only option to have surgery ?! 

it feels so extreme and because the doctor was very blunt and un-informative I feel like I've been left in the dark ... no information on wether it's grown etc . Like he's just jumped straight to the surgery option . 

Anybody experienced anything similar or have shy more information on this to educate me more ?! 
 

thanks 

Hi LucyB,

It sounds like it's taken a very long time to get to this point. I'm sorry you've been on such a long ride already.

I also had an indeterminate biopsy result. Your biopsy should have a code (mine was Thy3F) which means the cells have characteristics of both benign and malignant cells. Unfortunately the only way to tell is to remove them and the surrounding tissue and look at them under a microscope. They also dye them and do all sorts of other things. I had half of my thyroid removed in August and I've recovered really well. I was home the same day. The wait afterwards was the worst part - it was 6 long weeks till my results came in. 
 

I had a microcarcinoma and pre-cancer cells in mine which weren't a million miles away from metastasising so I'm really happy they got it out. It really is the safest option. I know others who haven't been so lucky and it really isn't a risk I'd want to take. I'll be on thyroxine for life but taking a little tablet each day is a small price to pay to eliminate cancer. I had a CT scan last week to double check we're all good and hopefully I'll just need annual scans on my remaining thyroid (and another nodule ) going forward if it comes back clear. 
 

Feel free to message me if you need to talk it through or have any questions. It's not an easy journey but you'll get there! Most people don't even need thyroxine and most people have happy news when the results come in ️ 
 

Sophie x

Thankyou soo much for your response !!! 
That has made me feel so much better and reassured! 

I'm so glad you recovered well and they got it before it progressed! 
 

you're right and I know it's the best option I just feel I have no info to go off and I know nothing about this (apart from googling) .... so have a million questions... at the time I was just blank and the doctor was insensitive (as they usually are) ! 
 

How's your scar doing and was you ok to swallow after etc ? 
apparently my appt is in 2/3 weeks . So should all be happening soon. 
how long did you have off work etc ? 
 

Very frustrating to wait soo long for your results  !! Onwards and upwards though now :) xxx
 

Sorry I got confused and put the wrong name on my last reply

Your neck will look a little bit scary for the first few days. Mine is a really fine line now and it's fading every day. After about 3-4 weeks you can start to gently massage a little bio oil or olive oil into it. I don't think mine will be noticeable at all in 6 months to a year! 
 

They advise you to have 2 weeks off work but I needed 3. I was up and about in a couple of days but my thyroid levels weren't quite right so I struggled with tiredness (I still am actually). You'll also be told to shield for 2 weeks prior to surgery and 2 weeks after I think. Make sure you book some shopping deliveries! 
 

Swallowing was fine. It was just like a mild sore throat. I was able to eat almost immediately after surgery. My voice was okay too but I know some people have a hoarse voice. 
 

What do you know about your nodule?

If I can offer one piece of advice - get copies of all of your results from the hospital. I'm set up with it so they email me anything that comes through. I was told I had cancer by mistake and having my results allowed me to challenge it. It's good to understand as much as you can. 
 

Actually I'll offer more advice - I know it's hard but try to stay away from Google. It can really eat away at you. Especially when you're waiting. I was on it a lot and in hindsight, I made it a lot harder on myself. Understanding that you can't control it and knowing that what will be will be makes it a lot easier.

Honestly, if you have any questions just pop them over and good luck! x x

Sorry I got confused and put the wrong name on my last reply

Your neck will look a little bit scary for the first few days. Mine is a really fine line now and it's fading every day. After about 3-4 weeks you can start to gently massage a little bio oil or olive oil into it. I don't think mine will be noticeable at all in 6 months to a year! 
 

They advise you to have 2 weeks off work but I needed 3. I was up and about in a couple of days but my thyroid levels weren't quite right so I struggled with tiredness (I still am actually). You'll also be told to shield for 2 weeks prior to surgery and 2 weeks after I think. Make sure you book some shopping deliveries! 
 

Swallowing was fine. It was just like a mild sore throat. I was able to eat almost immediately after surgery. My voice was okay too but I know some people have a hoarse voice. 
 

What do you know about your nodule?

If I can offer one piece of advice - get copies of all of your results from the hospital. I'm set up with it so they email me anything that comes through. I was told I had cancer by mistake and having my results allowed me to challenge it. It's good to understand as much as you can. 
 

Actually I'll offer more advice - I know it's hard but try to stay away from Google. It can really eat away at you. Especially when you're waiting. I was on it a lot and in hindsight, I made it a lot harder on myself. Understanding that you can't control it and knowing that what will be will be makes it a lot easier.

Honestly, if you have any questions just pop them over and good luck! x x

Hi Sophie,

I bet you are getting a lot of messages here but you went through it and I hope you're doing well now!

My problem started in Nov 20 just before my 40th. I had a pain on the right side on my neck and felt a little lump there. Few weeks later the lump and pain were still there and I started to worry so I went to see GP. He thought I must've been going through some infection (no symptoms) and it was my lymph nodes up. So I was told to stay in bed. Oh, I had slight fever too.

I stayed in bed for 3 weeks but after a first week post initial GP appointment, the lummp had gone much bigger and now I could feel 3 so I was told I needed a scan. I was also told to check all my teeth for any infections which I didn't have anything wing with.

In Dec I had the scan before Xmas and was told these were not lymph nodes but my right thyroid. They could see a lot of giant cells and also small nodule on the left side which wasn't painful. I was told this could be Thyroiditis.

I went to see ENT privately  a week later and he examined me and said again this could be Thyroiditis but another scan was already ordered and a referral sent to the endocrinologist. I had another scan, a lot of bloods and FNA on 12/01/21

I was so scared of the biopsy to the point I cried as soon as I walked in. As you know the nidle didn't hurt but the scan with it was so painful as the lump really hurts even on touch so pressing on it was horrible.

Anyway, last Monday I was sent the results via e chart letter(!) that the results were indeterminate and that I need a surgery to remove right thyroid to test it further. I think there's 3 nodules each less than 1cm and they gave it Thy3a my My bloods are showing an inflammation too. I was devastated to say the least especially that they didn't even call me to tell me the news or explain anything.

I managed to speak to the endocrinologist and she told me all I already heard from her on the biopsy day, all the good statistics etc , but confirmed that the surgery is the only option and they put a referral as cancer so it would be processed quicker even though it probably isn't.

I saw a private surgeon yesterday who funny enough knew my case because he was at the MTD meeting where they discussed me at the hospital where he also works. After a lot of chats and camera down my nose he agreed that this could be Thyroiditis (but very unlikely) so I'll be taking ibuprofen for one week and than steroids for 5 days. At the beginning he thought my pain which is radiating to the jaw, ear, collar bone, back of the neck and head, that all that is only muscular until he examined me. So that makes me think that none has ever listen to me when I was telling them about my symptoms. From the beginning it looked like Dr Queveira's and I could've been treated with steroids. So he'll try now but not for long enough in my opinion. They are convinced that the surgery is needed also because I was possibly exposed to radiation as child. Possibly I have Thyroiditis but also nodules. Now I have an ENT pre op consultation at the NHS hospital in a week, and in two weeks follow up at the private hospital to see if steroids made any change.

I have been so scared in those last 3 months and have been to some dark places and this week, after I found the letter I've been in pieces. I feel a little better today after that consultation but reading all comments here I'm getting anxious that perhaps I'm wasting the time in testing steroids. Honestly, turned 40 and went straight to 70!

Hi Sophie, I feel your pain.

My nightmare started at the beggining of this year, with neck and ear pain. I thought my body is fighting with some virus, but it did not want to get better. I started to feel suspicious, so I searched on lymph nodes and I figured out it is not my lymph node, it's my thyroid. Some more research, found thyroid cancer, got really scared (have an 8 months old baby), so went to gp.

He said it must be lymph node, but if in a week it does not get better, he sends me to scan. I went private, the first private doctor said it's stress related. I was very puzzled, and asked him is it not my thyroid by any chance? He send me for a scan, next day I managed to book a scan, the doctor who scanned me said I need a biopsy.

Very lucky, next day they did a fine needle aspiration, i was terrified, they had to poke me 3 times, the 3rd was very painful. I was shocked after and shaking. I was so upset. The first doctor after a few days sent a letter that he will pass me on to an other doctor who is thyroid specialist, so I will have to discuss the results with the new doctor.

That's what happened today after a week. It was meant ot be a phone consultation, the doctor called me and asked me to get to the hospital now, he will explain everything. You can imagine what went through my head on the way there, I was trying to guess how much time I have left, what I will hear. He showed me my scans, he explained what u4 thyroid gland category means (that's the category I got, and said it looks very suspicious, but my result came back as negative, so they need a larger piece of my thyroid to make sure it is or it is not cancer.

So they booked me in for a CORE NEEDLE ASPIRATION which is with a larger needle, with local anasthetic. I am very upset, very scared, terrified. Athough the doctor told me that thyroid cancer is well treatable, survival chances are very high. But still, I look at my small kids and my heart is totally broken, I need to see them growing up. I just turned to 41! I am so so scared.

Let me konw how your story goes, I hope you will be better. All my prayers are with you. Fingers and everything is crossed.

Hi SmithyKL,

Thank you for sharing your story. I am so sorry you are going through this as I am. I understand how upset you are, I really do! I also just turned 40 in November and straight away went ill feeling more like 70.

You are very lucky to have your tests done so quickly. I had to wait for every stage for at least 2-3 weeks. The symptoms you are describing are the same as mine. Plus my thyroid function tests came back fine but I had indication of an infection which shown on blood tests CRP and ESR.

I was not offered bigger needle biopsy and I was told that the results will be the same and that the only way to find out is to remove the right side of the thyroid. I am ok with doing that but in my opinion my other symptoms were overlooked that's why I saw the private consultant. I have been taking ibuprofen for 8 days and just after 4 days (3x daily) I saw that the very painful lump in my neck has gone! I was still getting an occasional fever and felt extremely tired, on top of that the left thyroid side started to hurt but much less and I felt no lump. I am noe on 3rd day off steroids (5 days course) and stopped taking the ibuprofen and I have no symptoms at all(cleared before I even started taking steroids). My neck has cleared, I have no fever no lump, brain fog is gone. I'm still a little tired but I'm not sleeping well and I haven't been out for weeks. I'm writing from home for a hospital and sunny move much. I am seeing the private consultant tomorrow for a follow up. I've updated him already on the progress and he emailed me back saying that he'll arrange for another ultrasound to check if the lesion improvement. The problem was that I might have subacute Thyroiditis hence all symptoms but on top of that I have lesion which needs the surgery. So I'm praying that the scan will come back clear and that the lesion was ac result of that infection which I was told o could be the case. I will keep you updated. Perhaps this might calm you down that if you do need a surgery at the end you won't need it urgently (that's what I was told) so it's not live out death matter which needs to be operated immediately. Also most of the time when the thyroid or part of removed because of a lump, it'll turn to be a cyst type and harmless but had to be removed due to issues it's causing to the function of your thyroid and the fact it's difficult to see what it really is without removing it. I was also extremely scared when having the find needle biopsy done. As soon as I walked in to the run I burst into tears. I had 4 samples taken and 3rd and 4th Hurst so much that I cried. That's was due to the pressure on the very painful lump. I was very sure for few days.

Please don't worry too much although I know it's difficult. I have been in a terrible state since the biopsy result. I was terrified, crying by seeing people's babies worried that I'll never have a chance, crying when watching TV, saying goodbye in my head with this world already. It was horrendous! But I finally calmed down by taking to friends and my partner. I am not a doctor but maybe you could try to take ibuprofen for few days while you're waiting and see if you feel any better. If it is Thyroiditis which is causing those symptoms, I hope it can help. 

If I can advise, take a hot bath with lavender and essential oils and put calming music on. This really helped me on the worst day and moments. Good luck. Please keep me posted!

Hi, 

I was just going to sleep and remembered something that might give you hope and positive thoughts. I read on several medical documents about subacute Thyroiditis and came across postpartum thyroiditis. It's worth reading about it! Keep taking ibuprofen if I can. Knowing that the cells they have found in the biopsy could be a result of postpartum thyroiditis should be reassuring and give you a little peace of mind. Keep positive! 

Hi Mon, 

I hope your doing okay! 
 

I'm in a similar situation to you. I'm 25 years old and have a 14 month old baby. I'm feeling exactly how you just decscribed. It's utterly heart breaking.
 

I have suffered with overactive thyroid on and off for about 10 years now. Always been treated with tablet form medication. Even through my whole pregnancy. I was randomly sent for a thyroid ultrasound by my endocrinologist. I had this done on 12/2/21. At the scan they found 8 nodules on the right side and said they would be checked again in 6 months to be monitored. Then they found something in my throat but could not identify what it was (wasn't voice chords etc) so I have been referred to ENT.
 

On the left side they found 2 nodules that were 'vascular' (didn't have a clue what this meant at the time) there was one just beneath the surface and one behind my thyroid. They did an FNA and said my results would be sent to my GP within 10 days. 
 

I can't even explain how I'm feeling. I am so anxious and scared. 
 

Keep us informed on how things go. 
 

Liv x

Hi,

What were your results?

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

Hi,

I am in a very similar situation. Please can I ask what your outcome was? Thanks