Over a year ago, I was diagnosed with multinodular goitre, which then, according to ultrasound, were all benign. The consultant suggested having a total thyroidectomy on basis that the nodules were quite large (5cm, 4cm, 3cm), one module is pretty close to the trachea but is not currently compressing it, and his argument was leaned toward cosmetic correction.
Surgery felt excessive at that point, given my age (i was 30 y/o at diagnosis), and I thought there must be another way to sort this out. I was also not majorly bothered about the “lumps” in my deck, and my thyroid levels were (and still are) optimal. So I’ve done my research, asked for second opinions and decided to reject the surgery at that point and try other avenues. I’m still chasing NHS for the next steps, but I guess my situation has since changed too. So…
Fast forward to a couple of weeks ago, I went to see ENT for a non-thyroid-related issue, and he recommended that we do another ultrasound to see how the nodules were doing. And so, the imaging found some “borderline abnormal” spots in one of the nodules, and we took a biopsy out for further testing.
I saw the ENT today, and he has confirmed that the cells were somewhat abnormal, and it puts me to an intermediate risk for Follicular Thyroid Cancer. Now because of the type of the cells, they cannot tell exactly whether it is benign or malignant (I thought modern medicine was more advanced, but each time I get a block or “we don’t know what causes this” as a form of explanation. Anyway…).
The ENT has given me a 15-20% chance of the cells being malignant, and again they can only confirm it post-surgery. So now, as a treatment, we returned to square one - thyroidectomy. The consultant, worth mentioning, is a different specialist to the one that I saw last year; he said he’d generally recommend partial thyroidectomy, but in my case, a full one would be a better option.
Now, I’m currently at a crossroads regarding what to do. I don’t want to rush into making any decisions that can alter my life significantly in the long term. I am now investigating this privately, thanks to my medical insurance, so things will move around quite quickly and I can be a bit more flexible with appointment, delays, etc.
So I guess my question to the broader audience is:
1. Has anyone had similar situations? What did you do? Are there any other options other than a surgery?
2. Is my thinking that 15-20% is a relatively small chance still, and I can continue to observe the nodules and see if there’s any growth, changes, etc.? 80% of it being benign sound like pretty decent odds? Am I being too optimistic?
I’m currently a very healthy and fit person otherwise, with no severe health issues or conditions, and the idea of being dependent on synthesised hormones is a bit daunting. I’d really really love to avoid it.
Also, this is such an amazing forum, I’ve found so much good content and advise when I had just a “regular benign goitre” and I would really like to thank everyone that’s contributing to this amazing community.
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Foxngli
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There should be a more conclusive fine needle biopsy before anyone robs you of the most important gland in your body.
People with thyroid glands shouldn’t be advising a perfectly good gland to be excised on a slim chance of malignancy. That’s why there are biopsies, for goodness sakes. 🙄
But also when the nodules become larger the fine needle biopsy is now hitting a smaller area in comparison to the rest of the surface area. Making a more significant chance of missing any area of potential cancer with the needle.
Not arguing the likelihood of cancer, which is low. Simply explaining how growth affects the certainty.
The ENT consultant I saw yesterday said that because of the type of cells they've found in a biopsy, it was near impossible to distinguish whether it's benign or malignant, but it was somewhat suspicious nevertheless. Which, I don't know, it's very frustrating to say the least, but now I do wonder whether it was missed like Litatamon mentioned 🤔
I think the best course of action is to try and delay the consultation with a surgeon and go elsewhere to get another biopsy and yet another opinion. At this point, my thyroid is far more valuable than any additional costs that this investigation might incur.
Again, thank you so so much for reassuring me that I'm not mad for trying to question everything!
A second opinion is a great choice. I would have absolutely continued to monitor and have biopsies if the placement/size was not adversely affecting my life & health. The inconclusive nature of your nodule type is very frustrating & makes it all much more difficult to navigate. A second opinion is a must. And remember surgeons like to perform surgery, see it as a productive tool. An endocrinologist's thoughts are helpful as well.
Mine made my decision clear by asking me to raise my arms above my head and slowly lower my chin. It showed me how much blockage was occuring. And surprised me greatly.
Have you had TSH, Ft4 and Ft3 tested, plus thyroid antibodies and vitamin D, folate, ferritin and B12
Ask consultant, if you have thyroidectomy and are one of 20% of thyroid patients who don’t do well on just levothyroxine, can they agree you may need liothyronine prescribed alongside prescription
I have had a thyroidectomy due to larger nodules, two out of the five or six. And their placement affecting breathing and swallowing.
My needle biopsies were clear & I was absolutely content to monitor. As you have expressed. I was often saying no way I bet they will need to take the entire thyroid to get those two & I refuse to go on medication for life.
But some circumstances changed my thought process.
My surgery was a success in my eyes (and the surgeon's) & daily I am awed by the positive changes. Even more than I realized while suffering.
But the medication has been a struggle.
I was also surprised by the fact that the thyroid that had perfect numbers on paper - it was not the issue why a thyroidectomy was decided upon - , was diseased, twice the normal size & purplish grey in colour.
I think I am the most worried about medication and potential side effects or the time it might take to find the correct medication or dosage.
I really wish you all the best and hope your struggles with the meds be over soon; I can only imagine the frustration and hurdle it causes your life. Stay positive, and I'm sure you can conquer this giant mountain!
Thank you. So sweet of you. All the best with your decision..
(And to be fair to the outcome, for others reading, I would have immediate access to NDT here through a naturopathic doctor. But I do not have the funds to access that choice right now. I also have a doctor who only believes in levothyroxine. So others might not have their hands tied in this manner after the choice of a thyroidectomy.)
I was faced with a similar situation some 14 years ago. You say 'we took a biopsy out for further testing, how did they do this, was it a fine needle test? I was faced with a growing and uncomfortable goitre and inconclusive results from the scan and needle so a partial thyroidectomy was performed. However, the biopsy taken after the operation found cancer and I was returned to surgery for a total thyroidectomy and radium treatment. Luckily it has not spread and the treatment undoubtedly saved my life. I don't believe private medicine will give you any different or better treatment because it is usually exactly the same surgeons but they might treat you slightly better, free cups of coffee, etc. but a second opinion is good and there is likely to be less waiting.
I don't wish to worry you but I thought you might wish to be aware that the tests are not always conclusive and a partial thyroidectomy would remove the nodules and allow a full biopsy, perhaps worth doing. There might be alternatives that I am not aware of. See the Butterfly Thyroid Cancer Trust for specialist thyroid cancer advice.
The goitre itself is not uncomfortable at this point and is not causing any significant issues, and only one nodule has grown slightly since my last US over a year ago.
I agree; I don't believe private practices find anything different or do a better treatment; however, it did give me more time with the consultant. When I saw the consultant surgeon last year via the NHS, I was only given 10 mins for my appointment after waiting five months to see him. I don't think that surgery and possible side effects and consequences can be explained in 10 minutes, while half of the time was spent on him familiarising with my case. I was left with more questions than answers, but the consultant didn't have enough time for me as my appointment was already late by 2 hours, and there were plenty of other people waiting to be seen by him on that day. I then had to chase his secretary for another four months to try and get another conversation with him.
Perhaps, I was unlucky with my experience, but it didn't give me much confidence.
And, yes, I agree, any chance, however small it might be, is still a chance of the cells being cancer. Thanks for pointing out Butterfly Cancer Trust. I will seek advice from them.
Hi I had a large lump on my thyroid back in 2015 it had moved my trachea and I found it harder to breathe. I also had two FNA which both came back negative. After my thyroidectomy the lump was tested and came back with papillary cancer.My thyroid was working perfectly before the removal which was very odd. Anyway
seven years later I am still self medicating with NDT and feel really well at 76 years old.
My advice would be DO NOT let the ENT take out your thyroid or give RAI until you consult with Endo for a second opinion and another Fine Needle Biopsy.
I made this very mistake had ENT tell me that everything was fine with my nodules until my health crashed and burned and I was sent to Endocrinologist who did another FNB and it came back as cancer he proceeded to tell me you should have never been seen by the ENT they should have referred you to us. Do I believe this in my case yes.
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