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Thyroid nodule - abnormal cells

Founty
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Hi everyone 

 

It makes me nervous even posting to this site but I'm hoping that if someone on here has been through something  similar then they may be able to provide me with some advice.

 

In October 2019 my hairdresser told me she had found a lump behind my ear and wanted me to get it checked out. I also had noticed a lump on the front of my neck that looked like an Adam's apple and when I brought it to my husbands attention he said he had never noticed it before but looked to be part of my neck... I could get my fingers around it and so I was concerned. 
 

I saw my GP who put me on a 2ww. I was told I may need a ultrasound guided FNA. Bloods came back fine. I ended up just having an ultrasound as they said my cyst was spongelike in appearance and an US was now considered a method of diagnosis for thyroid nodules. My lump behind my ear was deemed to be a lymph node possibly swollen at the time from illness but it had since gone down. I know these are medically trained people but honestly I felt like I walked away from that appointment not in the slightest bit relieved. I wanted a biopsy not only to rule out cancer but also because I wanted to know why I had this 1.7cm visible lump on the front of my neck. At this point I couldn't stop looking at it or feeling it. The doctor signed me off, with no follow up at all unless there was a significant change in the lump (this also worried me greatly!)
 

In May 2020, I was convinced it had gotten bigger. I called my GP who due to COVID and me having a scan only 6/7 months prior refused to see me. 
 

In October 2020 my husband took a family photo of me and my children whereby my lump was clearly visible and he was worried. He asked me to book an appointment with our GP. I went private. Had an US again, no significant changes since October 2019. The doctor said I would be followed up in 6 months and that my cyst was benign. I asked him to attempt to drain my cyst as it was causing me distress cosmetically. He agreed. I had my cyst drained in February. As a result of the draining of the cyst a biopsy was taken. The cyst unfortunately filled back up within 24 hours.
 

Last week (we are now in March!) the consultant called me for a telephone consultation which I thought was odd since he had agreed to see me in 6 months to rescan. He told me there were abnormal cells within my biopsy and he couldn't say with certainty what they were however since the lump hadn't grown in size he wasn't overly worried; but also couldn't ignore the fact they were there. He said there were several reasons I could have abnormal cells, including cancer but also non sinister reasons such as them potentially being damaged during the fna process or when the cells were put between the glass plates (inflammation markers were also up). He offered to remove my thyroid if this news made me anxious or to rescan in 6 months. I didn't particularly want either of these options just yet and so I asked him to rebiopsy. He agreed. 
 

im waiting for my appointment and now full of anxiety and worry. It's likely they'll come back abnormal again if they were damaged during the removal process and if they do what do I do?! What is life like on thyroid meds? Am I being foolish to consider taking my thyroid out or is it sensible? I feel as though my consultant has given me full responsibility on making my decision. I am only 33 years old with two young children age 4 & 6. I've worried about my thyroid continuously for almost two years. 
 

im also considering seeing a naturopath to help me take control of whatever this situation is if anyone has any advice or can point me in the right direction for that ?
 

Any advice would be greatly appreciated.

  • Offline in reply to Founty

    Hi Founty.

    Firstly just reading through your journey, you are so resilient! It sounds like a really tough route to diagnostic so well done.

    I had my TT and neck dissection 4 weeks ago. This wasn't diagnostic as I already had the papillary diagnosis from the biopsy confirmed. I asked my consultant about staging and he said it is less common to do so for thyroid cancer. At my age it is stage 1 unless it's spread outside of the lymph nodes (my chest ct was clear so this has been ruled out).

    Therefore he said the TN is not relevant for staging when under 55 and my M is 0. This is true for the majority of diagnosis under 55. 

    "Papillary or follicular thyroid cancer in a person younger than 55 - Stage I: This stage describes a tumor (any T) with or without spread to lymph nodes (any N) and no distant metastasis (M0)." 

    Hope this helps, thyroid does seem to have its own nuances that aren't what we expect from cancer - but learning journey for us all. Do you have your clinical nurse assigned, even if you went private you should have this, it's important and they can support with understanding and questions.

    E. 

  • Offline in reply to Greece_E

    Hi E

     

    Thanks for getting back to me. It's been a tough journey but finally feel some relief at getting to the bottom of it, although I've been very emotional this past week.

     

    I haven't had any diagnostic testing which is my main concern. So no CT's and no assessment of my lymph nodes. I think I may  contact my specialist nurse on Monday to ask for next steps etc. 
     

    Wishing you lots of luck going forward. 

     

     

  • Offline in reply to Founty

    Spread outside the neck is relatively uncommon with papillary thryoid cancer. Something like 1%-4%. And if you are stage one, it means it hasn't spread outside the neck.

    I had an appointment about two weeks after my operation or two and a half, I think, where they confirmed it was papillary thyroid cancer and had spread to 8 lymph nodes out of the 57 or something that they removed. If they haven't removed lymph nodes, they are probably fairly confident it hasn't spread to them. 

  • Offline in reply to MargaretMary

    Thank you for getting back to me.

     

    I suppose in my own head I'm confused how they can be sure it hasn't spread without testing or looking for them! Maybe it's because my diagnosis has been a bit back to front and they had to operate to get a diagnosis that they didn't look for anything other than the initial cancer yet?

     

    im probably just over analysing and worrying about everything. I need to try and remain positive but I'm sure you know how hard that can be at times. It's hard to not let your mind run away with you isn't it. 

  • Offline in reply to Founty

    I was told that they look around at the lymph nodes while they are doing the operation removing your thryoid and if they see anything suspicious then, they remove them. Before the operation, my surgeon said he was planning to remove the lymph nodes on the left-hand side and I may need those on the right-hand side removed a year later. After the operation, I asked him again about that and he said it was very unlikely, that he had checked during the operation and would have removed them then had they been concerning.

    And yes, I definitely know how hard it is not to worry.

  • Offline in reply to Fabiane

    Hi Fabiane, how are you? I'm still struggling to comprehend the lack of imaging tests after my cancer diagnosis. I've actually managed to get a second opinion from a oncologist in London who believes that my treatment has been standard but does believe my consultant has perhaps been a little too relaxed with regards to further scans to check for metastases etc. 
     

    When I look back on videos I can actually see my lump as far back as 6 years ago. I only noticed it 2 years ago. 
     

    i don't feel I can move on or have any peace of mind without this imaging. I just wondered how you were feeling and if your care had progressed any further? 
     

    Wishing you health and happiness xxx

  • Offline in reply to Founty

    Just picking this thread back up rather than starting a new one so people know my history. 
     

    Since my diagnosis I had a total thyroidectomy and low dose radioiodine at 1.1. I had the radioiodine because I couldn't put the situation to bed, I couldn't move on without the worry that nobody had looked for the cancer elsewhere. Having the radioiodine and the follow up scan would show me if the cancer had spread. However, when I got my results my oncologist couldn't (or wouldn't) tell me if the cancer had spread to my lymph nodes and simply told me the scan showed focal uptake in the neck in keeping with remnants from a thyroidectomy. 
     

    i have three lymph nodes that are permanently swollen in my neck. Even now post radioiodine. I've since spoken to multiple people who've had thyroid cancer and they all had CT scans. They all knew they had cancer in their lymph nodes so how can my oncologist not be able to tell me if I had cancer there or not? I'm very confused.
     

    I'm assuming it's because my diagnosis was back to front and I didn't get the diagnosis until the surgery confirmed cancer and so they never had the opportunity to look for it elsewhere but I'm concerned that they've missed something. 
     

    I do know that radioiodine would clean up any cancer left over and my thyroglobulin level was 0.1 recently, pre radioiodine it was 0.3.. I'm assuming my oncologist will now use 0.1 as a baseline to confirm whether the cancer stays away or not. I see him again in June. 
     

    I'd be so grateful for others insight or advice..

     

    thank you 

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