Thyroid nodule – abnormal cells

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5 posts since

6 Apr 2021

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.

26 posts since

7 Apr 2021

Hi.

I had my thyroid removed over a year ago and have been on thyroid meds ever since. The only difference being on the meds has made to my life is literally just taking the tablets every morning. I don’t feel any different at all. I know some people have difficulty with them, but my impression is that most of us don’t.

I don’t have any advice as to whether or not you should have your thyroid removed. My situation was different. However, I can say that having my thyroid out meant feeling sick from the anesthetic overnight and having a sore neck for a while and that was really it as regards problems.

5 posts since

6 Apr 2021

Thank you for your response Margaret. I’m glad to hear you don’t feel any different. That’s reassuring.

 

An update from me, second biopsy came back as a 3 (the same as the first) but the consultant sent my first biopsy to another pathologist for a second opinion who has upgraded it to a 4 meaning it’s suspicious for cancer, I believe. He is taking my case to the Head and Neck MDT mid May for advice / guidance and scheduled me for surgery 9th June. If the MDT downgrade my nodule surgery will be cancelled. He said a 4 will mean partial thyroidectomy and if it’s upgraded again to a 5 it will be full thyroidectomy.

 

I just can’t believe 18 months ago I was sent away without a biopsy on the basis of a scan. My scan results are still unchanged but because I pushed for a biopsy I now have these results. It’s terrifying to think I would have just left it.

 

Anyway, I’ve had my tears. Keeping myself busy and putting it to the back of my head for as long as I possibly can. Best wishes to everyone who reads this xxx

26 posts since

7 Apr 2021

Hope you get good news, but just wanted to comment that even if it does turn out to be cancer, most forms of thyroid cancer have very good prognosis.

I was diagnosed about a year and a half ago, had my thyroid removed in January 2020, was fine after a few days and then had radio-iodine treatment last May, which was only a nuisance really. It just meant taking a tablet and having to spend a few days in the hospital so as to isolate from other people as I was radioactive.

I am absolutely fine now. There were a few scary moments when I had full body scans because, even though I knew the odds were everything was fine, it’s hard not to worry that you will be in the minority that has spread or complications or whatever, but thankfully, everything came back OK.

For the whole experience, I missed a month of work after the operation and would have missed two other weeks for the radio-iodine treatment had we not been working from home at the time, but beyond that, not much has really changed in my life.

5 posts since

6 Apr 2021

Hi Margaret 

 

Thanks for sharing your experience. It is really helpful. Did you have full body scans due to your concerns or because of the cancer diagnosis? 
 

Did you miss a month of work following the thyroid operation? This is something I need to consider as I am self employed! But, of course, health comes first!

 

Thanks again xx

26 posts since

7 Apr 2021

The full body scans were just routine basically. They may not apply in your case. It depends on the size of the nodule, whether it has spread to the lymph nodes, etc, but as the nodule was quite large in my case and there was some spread to the lymph nodes, they thought it was advisable for me to have radio-iodine treatment and that was followed by a full-body scan, both a few days afterwards and then 9 months afterwards, mainly to be sure it had worked and that the remaining thyroid tissue was removed, but it can also pick up if the cancer has spread anywhere else in the body. This is relatively unlikely, but it’s hard not to think “well, somebody has to be that one in a hundred (or whatever the exact numbers are) and it could be me.”

I had my operation on the 6th of January and went back to work on the 6th of February. It would have been possible to miss less time though, depending on the nature of the work. I am a teacher, so I really needed both to be able to turn my head easily and for my voice to work. Even after I went back to work, there was a week or two when I had difficulty making myself heard when on yard duty and I had students calling “Miss says you’re to come back over here!” This would not be a problem in most areas of life though. Until I was on yard duty, I didn’t even notice that my voice was weak except after I had to talk for long periods of time.

And if it had just been the thyroid that was removed, I could definitely have missed less time. The removal of the lymph nodes meant it was a larger operation. Originally, the consultant said about 2 weeks, but the nurse said that as a teacher, I should probably take four weeks if it’s just the thyroidectomy and 6-8 if the lymph nodes are removed as well, so I basically split the difference.

5 posts since

11 Sep 2018

Hi. I had my thyroid parcial removed a month ago. Unfortunately my biopsy came back positive for cancer. The doctor told me that nothing else would be done, cause i am cured. But not tests to see if there is anything else in my body. This worries me very much. 
Founty my advice to you (cause just like you i was unsure about surgery), go for it. You only need to take replacement pills and you have a life ahead of you. 

i have a little cut in my neck and my body is adjusting at the moment. Just like you, i have a 11 years old son who needs me. 
The prognosis for thyroid cancer is good. 
wishing you all the best. ❤️

5 posts since

6 Apr 2021

Ah ok. I see!

 

thank you for the info and I am glad to hear you are feeling well now. Xxxx

5 posts since

6 Apr 2021

Hi Fabiane

 

Thank you for sharing your experience with me. I’m so sorry further tests haven’t been completed and that you live with that constant worry. That in itself is an incredibly difficult thing to carry around. 
 

The changing of my pathology results and the upgrade to a 4 has pretty much taken the decision out of my hands now so unless by some miracle the MDT downgrade my biopsy results I will be having surgery on 9th June. But, like you, I have children to be here for. No amount of risk is worth it to me, no matter how small. 
 

best wishes to you too and I hope you get those investigations for peace of mind if nothing else xxx

5 posts since

11 Sep 2018

Hi Founty! 

Wishing you all the best and take care of yourself. 
to my Family to yours. ❤️

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