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I have been diagnosed with nodes on my thyroid. The nodes are cold. If I remember correctly. The doctor explained to me that a cold nodule can mean cancer and they wish to aspirate it. If they found cancer cells she said, they would remove both sides of my thyroid. After my reluctance to undergo the aspiration, she agreed to watch it and have another ultrasound exam in a few months to see if it grew. But my TSH was way off, which is what prompted the further tests. She has not prescribed any medication, saying until they know it wouldn't work. I don't know what she meant by that, but I would like to know from those who have had their thyroid removed how they are faring. Do you feel better because you had the thyroid removed and are taking medication?
OP, obviously I am speaking for myself, but if I had obviously swollen nodes that had been present for a while, the gland is showing evidence that it isn't acting normally, and a provider was concerned about cancer, I would agree to the aspiration. It is a simple procedure and can give results quickly. I would much rather find out if cancer is present sooner than later and have the opportunity to get RID of it before it gets more involved. If lymph nodes end up being positive the disease is already poised to spread systemically. If the aspiration is negative, it would be somewhat of a relief because you now have more specific information to work with.
Personally, I would find waiting without knowing for "months" until that next ultrasound pretty difficult. Anxiety, over thinking, too much catastrophic reading, second guessing take their toll. If I waited and cancer was found months later, I would always wonder if my indecision had set me up for more intensive treatment or complications because I didn't act sooner. Good luck with your decision.
Last edited by Parnassia; 02-08-2019 at 11:56 PM..
I have been diagnosed with nodes on my thyroid. The nodes are cold. If I remember correctly. The doctor explained to me that a cold nodule can mean cancer and they wish to aspirate it. If they found cancer cells she said, they would remove both sides of my thyroid. After my reluctance to undergo the aspiration, she agreed to watch it and have another ultrasound exam in a few months to see if it grew. But my TSH was way off, which is what prompted the further tests. She has not prescribed any medication, saying until they know it wouldn't work. I don't know what she meant by that, but I would like to know from those who have had their thyroid removed how they are faring. Do you feel better because you had the thyroid removed and are taking medication?
You have two things going on.
If your TSH was "way off," then you either have over- or under- active thyroid function. (Way off hi or lo?) Those kinds of thyroid problems are really common, so it wouldn't be rare to have Grave's or Hashimoto's thyroid problem plus a mass or cyst. [Let's forget about a pituitary problem for the sake of this discussion.]
If the doc called it a cold nodule, we presume it is a solid nodule and not a cyst-- ultrasound is good at telling the difference. "Cold" means it's not functioning thyroid tissue, so it shouldn't affect the TSH one way or the other.
Thyroid ca can present as a cold nodule ("hot" ones are rarely ca.) Therefore, waiting to aspirate it for diagnosis purposes is unwise. The longer you wait if it is ca, then the more time for it to metastasize and become a worse problem. Thyroid ca is very treatable when caught early....The aspiration procedure isn't as bad as having a tooth pulled.
I'm guessing your TSH was high, suggesting under-active thyroid, but not so far off that the doc felt treatment was absolutely required just yet. Taking thyroid replacement at this point would suppress your own thyroid function and screw up the value of a thyroid scan, should they feel another one is important in the near future.
As far as living without a thyroid, I've been doing it for 21 yrs now- one cheap pill every AM. I played amateur hardball until age 60 (my eyes went before my legs) and did most of the work building my own house last year at age 68. --Ah looks bad, but Ah feels fahn!
I think many of the women in my family end up with no thyroid for one reason or another, be it Graves or cancer. Just get it out. My mom has been on synthroid for 17 years now and has no real complaints. She can adjust the medications if she feels off.
My mother had all of her thyroid removed when she was very young and was on synthroid after that. She lived a long life with no problems at all.
I can not imagine anyone's being reluctant to have an aspiration when there's a question of cancer. Thyroid cancer isnt usually aggressive, but just knowing you might have a cancer in your body should be reason enough to be aggressive yourself and do what's necessary to ensure that you can live a long, healthy life.
I had a huge nodule on my thyroid, and having the aspiration was really not bad. Due to the size of the nodule, although the aspiration was inconclusive, when they went in to remove it, cancer was found behind it so they took the whole thyroid gland. The unpleasant part was afterwards when I had to do the radio-iodine treatments, including an ablation and a full body scan. Preparation for the ablation meant going totally hypothyroid, and that was unpleasant. The ablation was a large dose of radio-iodine followed by 3 days of isolation due to being radioactive.
As long as you take your thyroid replacement meds if your thyroid is removed, you shouldn't have any problems. My daughter went through the same thing a few years later. We are both just fine.
A funny anecdote-- it was halloween a few days after my surgery. I still had steri-strips all around my neck, and it scared a few little children when I went out in public.
I've had the FNA three times now and I'm going for another one in two weeks. It's not that bad. I have three large nodules on my thyroid, and about six years ago, I developed a rare disease called Hashimoto's Fibrosing Variant. They discovered it when they tried to remove what looked on the scan like a very large goiter. Instead, they opened my neck and found what looked like cement wrapped around my carotid artery and my trachea, which was why I couldn't breathe. (I sounded as if I was gasping when I spoke.) They couldn't detach the cement-like substance from the tissue, so they took seven samples and sent them off to the Mayo clinic to see what it might be.
My endocrinologist has been in practice for 40 years, and I am only the second case he ever had of this. The cement was shrunk with prednisone and Tamoxifen, and I am monitored every six months to see if it is growing back. If it had not been treated, it would have invaded my trachea completely and suffocated me.
Although the cement is gone, the original nodules remain, and I have to get them biopsied every so often. It's really nothing. They numb the neck before they go in with the needle, and the whole thing takes maybe 15 - 20 minutes.
For some reason they only biopsied two last time and forgot the third one, so I'm going back the week after next.
I had been hypothyroid for years but no other problems. I had an ultrasound done for something else on my neck and they found a nodule. did a needle biopsy which was inconclusive. So I had the entire thyroid removed and it was Papillary cancer. I was suppose to have the follow up radioactive iodine but for certain reasons I did not have it. this was three years ago and I have been on Levothyroxine since then, no real problems to speak of, though now I am concerned as I have some lymph node pain in my neck and have a hard time getting doctor to do anything about it or check it out.
I think I did the right thing going for the full thyroid removal though.
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