Thyroid nodule...inconclusive biopsy and possible surgery

Hi Everyone, 

I went to the doctors with a pulled neck muscle around 3 months ago and whilst she was examining me she found 2 swollen lymph nodes which she wanted checking out so I was referred for an ultra sound scan. Whilst having my scan they found a small nodule on my thyroid but was reassured that it looked fine but he would be mentioning it on my report. I was then referred to ent by my gp and the consultant there had a good look at my throat etc and seemed unconcerned but wanted the thyroid consultant to look at it. When I got to the thyroid consultant he seemed very concerned  and told me the nodule looked “abnormal” and was sent straight for a biopsy! After a a scary 2 weeks my results have come back as inconclusive and I have been given the option of another biopsy or to have it removed. Forgot to mention that my thyroid is also slightly over active and I have an appt with endricology in Nov. 

Has anyone else been in a similar situation? My anxiety is through the roof 

 

Emma

Parents
  • IT is scary i got to have ultrasoubd next week can i ask do you feel like you choke and hard to take breaths in i hope all goes ok yes im getting panic atracks too bless you x

  • Not for an ultrasound. U will notice slight pressure for ultrasound when they hold the equipment against your neck but shouldnt be choking feeling or hard to breathe.

     

  • I got ultrasound on thyroid on weds doctor wss not happy with my lump in neck so i will let you know

  • hello all.. I’ve just had ultrasound scan this morning on my neck, It was a Dr that done it, he said I have a 13 millimetre nodule on my left side and that my right side and parathyroid glands looked ok, he wasn’t concerned as he said my margins looked nice ‍♀️. I asked him how long will the results take and he said he’s doing the report straight away explaining what needs doing, so no doubt I will get a phone call from my Dr next week. Surely they won’t just leave it will they as I want it removed as it’s affecting my voice and catching the back of my throat, got a terrible cough and get shooting like pains towards my ear my bloods were also normal 

  • Hi I really wish I could help you but I had half my thyroid out in February and about 3 month after when all swelling was away I have had an awful horrible feeling of something stuck in my throat also, and I can get quite flemmy, like scratchy feeling in throat, I still smoke which I know I shouldn't but it is so hard, but it's like a scratchy feeling in back of my throat down around where my nodule originally was, I've being back and forth at doctors about it and had a scan said everything was clear, but if they could only see the speckles of cancer I had on my thyroid around my nodule threw a microscope how did they no for sure there wasent  speckles left on the right side, and she left the blood supply from my left to so why wouldn't the speckles be on there to, I'm just so scared and worried it is coming back as I've had a sore shoulder and neck right up to my ear to, on the side I have the thyroid still in, and my lymph nodes are swollen all across and under my coller bone, which really worries me, it's like sore between my ear and my shoulder just feels really tight. Doc says a certain muscle in my neck is spasinming but couldn't tell me why and gave me ibuprofen gel, which did not work, I'm at the point now where my thyroid level is still low even taking levothyroxine 100mg a day, and had my second blood test 3 week ago and came back low again then hospital said on phone we will put you up to 100mg, I said that what I'm on already cause it was low last time, so it's like no one cares or you get forgotten about or something, anyway she then said oh I will go back and speak to dr and phone you back in a couple days, but I read if levels keep coming back low once you on levothyroxine that can mean cancer was always still there or returned, so I'm going out my mind with worry again, and I really dont know how anyone can survive with no thyroid at all cause I'm really struggling to do it with half, I'd hate to think what it would be like with no thyroid at all, the energy levels must be so low, every second night I'm not sleeping to I'm feeling cold inside my bones every night to it's like the levothyroxine wears of as the day goes on, if anyone knows more please let me know did it take all your energy, can you sleep, have you had anyone or heard of anyone getting it back in the shoulder or neck, anyone with the same scratchy feeling in there throat after getting half thyroid out please comment, 

  • I hope everything goes ok for you deedee64. Keep us up to date. Thanks, 

  • Hi! I'm just wondering, why other part of ur thyroid hasn't been removed? As far as I'm aware, if result after partial thyroid lobectomy come as malignant, other half get removed too and some treatment take a place. My advice, u should ask all this questions to ur doctor.

    A THS levels usually are lower, if u have only half of thyroid. 

  • Hi Kristina, 

    Not necessarily. I had half removed and results came back malignant. Didnt have other half removed. Tumour had clear margins with no evidence of spread though. Every case and doctor differs.

     

  • I see. I'm still waiting for my surgery (will be in a few weeks time). My results was thy3 u3, with increased risk of cancer (childhood radiation). So surgeon explained to me all things I mentioned earlier. Hope, other half of thyroid will stay with me

  • They usually try to keep it if they can. Here's hoping u fit into that category.

  • I'm not sure as must told my nodule was pallpillary thyroid cancer. And had small speckals of cancer on the half that I got out, 3 weeks after op. Because of the speckles I was asked by my surgeon/ doctor if I wanted the other half out. So I said no and just took my chances. Cause I'm having a bad enough life right now with half a thyroid god know what it would feel like without one at all, they say you dont need it, but I think you do I had a perfect thyroid function before all this even when had cancer, now I just keep coming back slightly out with where they want me and I'm on 125mg now, mabye I'll regret not getting other half out, but i did ask what percentage that had speckles had it in the other side and she said about half and half so I took the chance like I said, not sure if did the right thing I'm sure I will find our tho.

Reply
  • I'm not sure as must told my nodule was pallpillary thyroid cancer. And had small speckals of cancer on the half that I got out, 3 weeks after op. Because of the speckles I was asked by my surgeon/ doctor if I wanted the other half out. So I said no and just took my chances. Cause I'm having a bad enough life right now with half a thyroid god know what it would feel like without one at all, they say you dont need it, but I think you do I had a perfect thyroid function before all this even when had cancer, now I just keep coming back slightly out with where they want me and I'm on 125mg now, mabye I'll regret not getting other half out, but i did ask what percentage that had speckles had it in the other side and she said about half and half so I took the chance like I said, not sure if did the right thing I'm sure I will find our tho.

Children
  • Hi had exact similar thing happen to you. Going for my results for the nodules removed Christmas Eve. My apponment is 2:30 but been told to get there for 12, should I be worried I'm so anxious now. Did you have the same? 
     

    Thank you, 

    Yasmin 

  • Hi 

    So many posts seem similar to my situation. I found a lump in Nov20, everything has taken ages, now end of Jan, so far confirmed not papillary or medullary cancer, but atypical cells. They want to remove it & half my thyroid, but with Covid going rampant...... 

  • A similar story here:

    Feb 2020 - found a lump.

    March 2020 - ultrasound scan and FNA: 3 nodules found. 1cm, 1.1cm and 2.7cm

    Late March 2020 - Thy3f result on large nodule. Referred for surgery.

    Radio silence for several months.

    Sept 2020 - I called the consultants secretary for an update. They advised I was booked as routine so it would be a while before I'd get a surgery date.

    October 2020 - I asked for a follow up scan to monitor nodules after increased discomfort.

    Dec 2020 - no response from hospital so I booked a private ultrasound. 1cm nodule now 1.6cm; 1.1cm nodule now 2.6cm. 2.7cm nodule now 2.9cm.

    Jan 2021 - called consultants secretary and forwarded scan results. Advised me they couldn't accept them as nodule classification hadn't been included. 
     

    So here I am, nearly a year later. My mental health isn't great. I understand the pandemic is serious but I'm just shocked that they can leave things for so long without monitoring. 

    Anyway.....

     

     

  • Heyy ... oh no , sorry it's taking so long !! 
    where do you live ??

     

    I actually got called in November to have mine done but that week I had some serious stuff on n couldn't isolate prior so I didn't have it done . 
    Then I've actually left the country now and plan to get it done overseas . 
    But I can't believe it's taking so long for yours.  As they were quick with mine . 
     

    do you have symptoms with yours then ? 
     

    I don't have any symptoms with mine and was find accidentally by looking at something else , 

    I would definitely keep pushing it to get operated on . 

  • Hiya, I'm in Rutland. 
     

    Honestly, I'm just so exhausted by it all. 
    I'm glad you've been seen quite quickly and I hope you're able to get sorted in your new country - it's nice to see that in general, most seem to be seen promptly but I guess that's an added frustration when I'm sat here. 
    Though I am trying to think positively and maybe they've seen something that makes them think my risk is very low? 
     

    Ive a few symptoms - fatigue, pain/tenderness in my neck and recurring sore throat. My thyroglobulin antibodies are raised but the private scan apparently also showed evidence of Hashimoto's so the above could be linked to that. 
     

    I've pestered my ENT consultant into a phone consultation on the 19th Feb so hopefully I get somewhere. Up until now it has been a flat no, we aren't doing these surgeries. But that doesn't seem to ring true ... 

  • ShazziH, I really feel for you. I half don't want to tell you my experience because I don't want to make you feel worse but I think it's important. 
     

    My nodules were found by chance last year. I had no symptoms and no visible lump. Following an ultrasound, I had an FNA in June which was Thy3f and although I was low risk in all areas, my referral was sent as urgent. My iffy nodule was less than 2cm so smaller than yours. I had a hemithyroidectomy in August and after a 6 week wait for results, I was told I had NIFTP (a kind of pre-cancer) and papillary micro carcinoma meaning no further surgery or treatment was needed. I'll just have my other nodule monitored. I so hope you have a good result at the end of this too - there's hope for that, I promise.
     

    My nodules grew a tiny amount in 2 years (2mm) so the fact that yours has grown so quickly would be concerning to me. Can you ask the hospital to scan again as you know they've grown? The waiting was the hardest part and I can't imagine what you're going through. I was told prior to surgery that they knew for certain that the nodules were not the more aggressive forms of thyroid cancer. These would have been diagnosed by FNA so that was a comfort. The others apparently spread very slowly, if at all so I didn't feel like they were in a rush with me but my wait was nothing compared to the wait you've had. I'm so sorry you're having to deal with this. 

    Mistakes were made with me too - I was told on 2 occasions that I had cancer and it was only through self research that I was able to challenge the diagnosis both times. It's unbelievable really. I think covid is impacting a lot but I'm not very far from you (in Leicestershire) and I can't understand how I was seen so much quicker. Please challenge it and if I can help in any way, please pop me a message. 
     

    Wishing you all the luck in the world. Sophie x
     

  • Hi Sophie, 

    Thabks so much for sharing your experience with me. I wonder if we're at the same hospital - I've been told the ENT dept there has had a few complaints about the length of time it takes to be treated. It's not reassuring. 
     

    I asked ENT to scan me again but they said the best they can offer right now is a telephone consultation on the 19th Feb. I've been to the GP this week as I've had neck pain which I think is linked to the nodules growing. It's that growing/stretching discomfort you get in your belly when pregnant. Anyway, I have some painkillers. 
    I've now noticed my heart rate has been spiking when asleep so am not sure if it's stress related or sleep apnea. Umming and ahhhing about if it would be beneficial to mention to gp. At this stage I feel a bit like a hypochondriac as I've spent a year worrying and there's been minimal progress. 
    I stupidly read that the follicular varient can spread, albeit slowly.... that'll teach me for being silly and tootling over to Google won't it? 
     

    All the best

    S

  • Hi I've had a lump in my neck for 18 years, they said hashimitos with goitre back then.

    Went to gp in November as I felt it had grown and was causing discomfort. I am also getting regular palpitations. 

    I had an us but they couldn't get a sample for fna as it is rock solid. 16mm in size

    Ct scan showed gap for needle so had another us this week where they think they've found enough cells to examine. Waiting on results now but really just want this lump removed. My thyroid is apparently shrivelled up and tiny so I'd like it removed too. 

    Not sure if I will even be offered surgery.

    The lump is calcified almost the whole way round. They did a fna 18 years ago and said it was just lymph node cells.

    They say uts probably benign but that doesn't stop you worrying

  • They told me the same - probably benign and that wasn't the case. Every case is different though.

     

    You're nodule is small so that's a positive - is it just the 1 nodule and did they say which side it's on?

  • Its my left side, they said originally it was a multinodular goitre but I'm not sure now that they believe my first diagnosis is accurate. Seems like just one. 

    Heavily calcified and I understand thats not an issue its the pattern of the calcification. Mine is smooth and apparently thats a good sign.  

    I thought they would just remove it as its causing my discomfort now. I was told the results should take a week so I'm hoping to hear them next week and what the plan of action is. 

    Not sure if there are any other symptoms if it is malignant? I get palpitations more often than I usually would. I've got a sensation of needing to clear my throat but that can just be thyroiditis. 

    I've taken next week off work cause I know I won't be able to concentrate for the worry x