# Diagnosis of 62% chance malignacy - does it mean thyroidectomy?



## macaroni (Mar 9, 2017)

Hi everyone

Boy i never thought i'd be posting this; a couple of weeks ago i knew nothing of the thyroid or related ailments, now all i do is research that and cancer. I'm sure you have heard it all many times before from many newcomers. I'm as new as it gets...

I'm male, 35 - doctors found a 1.7cm nodule on my right lobe. I had FNA done and that came back suspicious for follicular neoplasm. Then the sample was sent for microRNA testing and the results came back with 62% malignant / 38% benign...

I had read all the statistics before the tests; 95-99% of all nodules are benign, but it seems i fell in the smaller percentage.

I have been reading info about supplementing with Iodine (lugol's) to reduce the nodules, but i am wondering if that applies in my case given the fact i'm male, 35 and facing a 62% malignancy microRNA result. I'm a bit lost... i know they will push for full thyroidectomy, but i am wondering if it makes any sense to wait 3 months and re-do the ultrasound to see if it is growing or shrinking.

I know, it's probably insane and i should just remove it, i'm just having a hard time dealing with it...

any advice is greatly appreciated, i'm pretty lost...


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## joplin1975 (Jul 21, 2011)

Did you have blood work done? Specifically, were antibodies tested?

Do you know anything about the nodule? Is is a singular nodule? Is it solid? Was increased vascularity noted? Were any calcifications present?

Thyroid cancer is generally slow growing and has a good prognosis but it can be more aggressive and harder to treat in men.

You should find out the answers to the questions above -- I think it will help inform your next steps. But because of how thyroid cancer progresses in men, you tend to find most doctors taking a more aggressive approach when it comes to treatment.


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## macaroni (Mar 9, 2017)

Thanks Joplin - i did have blood work done and TSH levels tested but not antibodies. what was tested came back normal so the doctor was initially dismissive of any thyroid issues and actually just had me go for ultrasound to doublecheck there were no nodules.

I have not received so much information about the nodule - to be honest i can't even feel it myself on the outside but i have had for a long time difficult swalloing - it always feels like something is stuck in my throat.

I do recall my endo telling me there was no vascularity in the nodule - i am not sure about calcification but i do know it is a single nodule and I believe it is solid (if i recall correctly).

I will be seeing an ENT surgeon/specialist next tuesday and will be sure to ask all of these questions. If any other questions come to mind, please share - i am so grateful for any help i can get as i sort through these questions.

I know the odds of my being able to avoid full thyroidectomy are small... i am just worried about making decision without knowing whether nodule is growing and if so, how fast. At the same time i am worried about it spreading...


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## joplin1975 (Jul 21, 2011)

Well, the first rule of thyroid club is to always get hard copies of all lab and imaging reports. I'm assuming you are in the States and, if you are, you have a legal right to get copies of your records.

Lots of doctors say blood work is normal...and while it might be in the normal ranges, its not optimal. In you case, if your results are in the lower end of the normal ranges, it's another clue to what might be going on.

And, antibody testing is really important. TPO and TSI will show if you have an autoimmune disease. Tg/TgAB are used as tumor markers in thyroid cancer monitoring. Elevated levels of these make it more likely that you have cancer.

You could ask about a radioiodine uptake scan. It tells you how the diseased tissue is functioning. Nodules made up of semi-normal thyroid tissue uptake radioactive iodine at about the same level as normal/standard thyroid tissue. Cancerous tissue generally doesn't uptake radioiodine or, if it does, does so at a significantly lower rate. It is not 100% accurate, but it could give you clues.


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## my3gr8girls (Mar 18, 2016)

I was in your shoes a year ago. Never even gave my thyroid a second thought. Then my family physician found a nodule when palpating my neck so sent me for a ultrasound and then for a FNA biopsy which was, like yours, suspicious for malignancy. I work for a large university medical center where in this situation they remove half your thyroid and do a biopsy on the spot while you are still in the OR. If it comes back malignant, they remove the rest. If not, they leave it. In my case, it was benign DESPITE both my endo and surgeon convincing me it was probably papillary cancer. So, they left the right lobe intact. They removed the isthmus and left lobe. My surgery was last May and I do have to take replacement thyroid hormones. If they leave part of your thyroid, you may or may not need replacement. I am currently stable on 100 mcg of Synthroid so although I wish I had not even let them remove half, at least I know I don't have cancer and I am back to my normal self. Maybe you can find out if your surgeon has the ability to do the biopsy while you are still in the OR. Not all medical centers have the capability. Also if they don't, you could choose to go to a different facility where they do. Some people think it's better to just remove the whole thyroid but in my case I'm kind of glad I still have half. I don't have any autoimmnune issues to deal with.


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## joplin1975 (Jul 21, 2011)

That's a good point. It also should be noted that inter-operative frozen section exams have a high rate of false negatives.

So, you have to kind of stack you cards with as much information as possible and then play the odds.

***

Secondly, it is known that frozen section biopsies performed for certain types of thyroid nodules (follicular or Hurthle cell neoplasms) is of limited value because the pathologist needs to examine the entire nodule to see if there is growth (i.e. invasion) of cells outside the nodule. Typically a frozen section will only look at one or two slices of the nodule and not the whole thing.

http://endocrinediseases.org/thyroid/surgery_biopsy.shtml


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## creepingdeath (Apr 6, 2014)

Hey ,

It's your body.

I have a thyroid issue and take thyroid hormone.

I have no nodules as of yet.

But if I did and was going through what you are I'd get a second opinion before having any surgery.

You'd be surprised at the mistakes the medical community makes.

It's your right for a second opinion also.

I'd have another ultrasound and biopsy too.

For some people thyroid hormone replacement is a piece of cake.

But for most it becomes a long time "or even life time" battle to find the right kind of hormone and dose correct for them.

Just dealing with having to take a pill every day for the rest of your life is hard to get over.............

The best of luck to you~


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## macaroni (Mar 9, 2017)

Thank you all for the guidance you have given me on this, to be honest the support of people who have gone through this problem means more to me than 1000 doctor consultations.

I have a very extensive list of questions drafted and i am scheduled to see one of the top ENT surgeons in NY; i think since he is a surgeon he will push for full thyroidectomy, but i won't be pushed into something unless i am convinced it is the right way to do it. I think it is still valid to do some more tests and redo ultrasound in a couple of months to see if it is growing or not.

About the iodine supplementation - i do have very low iodine intake on a daily basis; i wouldn't be surprised if i was seriously deficient in it. I am taking Lugol's 2% iodine - i know it sounds like wishful thinking but have any of you had experience with iodine + selenium supplementation in reducing nodule size?

Also, is the microRNA test they conduct the most accurate test they can do or does it usually take many tests to make a decision? I realize 62% malignancy is pretty high risk, but still the 38% benign chance is what makes this decision so darn difficult...


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## joplin1975 (Jul 21, 2011)

This is a couple years old, but of the more recent articles I've skimmed on genetic testing, I believe the accuracy rates are basically the same.

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The accuracy for distinguishing benign from malignant thyroid neoplasms was 79% overall, 98% for Hurthle cell neoplasms, and 71% for follicular neoplasms.

https://www.ncbi.nlm.nih.gov/m/pubmed/22006248/

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It's a tool, but there's still a pretty big margin of error. So, again, the more information, the better.

If you decide to wait and get another ultrasound in a handful of months, you might want to think about repeating the biopsy. Some times the cancerous cells are limited to part of the nodule - a part which may have not been biopsied. Repeat FNAs will some times have different results just because of what cells are collected.


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