Hello! I'm new to this forum and am hoping to get some opinions on my thyroid "situation." In July 2012, my PCP noticed a lump on my neck and promptly sent me to a radiologist. Radiology report indicated that I have 4 thyroid nodules, the largest of which is essentially replacing my left lobe and measures 5.7 X 2.5 X 2.9 cm. Another largish nodule was found on my right lobe and is 2.3 X 1.2 X 1.7 cm. I had FNA biopsy for both of these large ones (the two additional nodules were both under 1 cm, so biopsy unnecessary), and pathology report came back as benign colloid nodules. I was advised to find an endocrinologist (I was moving to a different state in the midst of all this) as soon as possible and have a follow-up ultrasound in 6 months.
After moving and waiting for my new health insurance to kick in, I was finally able to get into a new PCP's office this week to get a referral for an endo. The PCP seemed alarmed by the size of the nodules (not the reaction I received from the previous PCP) and suggested that I will likely need a total thyroidectomy. She almost referred me straight to a surgeon, but then agreed that consulting with an endo first was a good idea.
I am confused. I'm not really having any symptoms, with the exception of frequent gagging, which is prevented by chewing gum around the clock. My TSH is normal, and I'd really like it to stay that way! I understand that the risk of hyperthyroid in the future is high, and that my nodules are quite large, but I'm also concerned about making a premature decision to remove the thyroid and then having to deal with all the ups and downs before it is absolutely critical. Plus, I just started a new job (one year contract only), and don't think I can afford to be out sick for very long.
Of course, I'm still waiting to see the endo, and he might have a very different opinion from my PCP, but I'm nervous that I will hear the same recommendation: Surgery. I would be really appreciative of any thoughts/advice/experiences, etc. regarding whether or not surgery would be a reasonable course of action at this point. I don't want to be stubborn for the sake of being stubborn (if surgery is really the way to go), but I've heard so many stories about the horrors of thyroid hormone replacement, that I prefer a wait-and-see approach, if at all possible. Thank you in advance for any thoughts! Also, I apologize if this topic has been covered in another thread, I am new and still figuring out how this forum works.
The word "nodule" is a nice word, but in your case, with that size, it's actually a mass/tumor. It's a thyroid lobe, growing on your thyroid lobe. Gagging all the time doesn't seem like a way to go through life to me?
I think if you wait any longer, a surgeon is going to have a tough time removing this, and may have to go into your chest. This is obstructing swallowing at this point, if it goes further, it can affect your vocal chords, breathing, etc.
This is likely benign, but sometimes even a benign tumor causes troubles---and you will never know from a small sample, like an fna if this is cancer or not.
I had thyroid cancer, and 2.5cm tumor---it was already adhering to the muscle in front of it----I hope you get this out---most people that go on thyroid hormone after surgery are fine---those who don't do fine go on the internet, and that's why it seems like just about everyone is having difficulty.
Find a great surgeon, who understands how complicated this surgery will be---you may actually need a chest surgeon in addition to an ENT on call for your procedure. If your surgery goes well, and it should, you shouldn't need to take much more than a week off to rest.
The Following User Says Thank You to Reece For This Useful Post: stickynote75 (09-23-2012)
Thank you so much for your quick and helpful response. I never even thought about the possibility that the FNA could have missed cancer cells, and my PCP did not mention this either. I know that this is still unlikely cancer, but a definitive diagnosis alone is probably reason enough to follow through with surgery, not to mention the others reasons you listed. I think I was so relieved by the initial FNA results that I somehow thought I was home free. Also, it is reassuring to hear that so many people do fine after surgery. Hopefully, if surgery is a go, I will be among that percentage of the population! I'm still super nervous about the prospect of surgery, but it sounds like it would be to my detriment to wait. Thanks again for your response, Reece.
Thought I would post an update, mainly just to have something to do with my anxiety about waiting for the next set of results. Had first endocrinology appointment a little over a week ago. Endo was in agreement that surgery is the most likely course of action here. However, upon palpation of the thyroid, he is really suspicious that the left nodule is not as large as the ultrasound indicated it is. I, too, am suspicious. I can definitely feel enlargement of the left lobe, but if I really do have a 5.7 cm mass, my guess is that it would be visible and maybe even disfiguring, which it isn't. Anyway, I had a second ultrasound today, to confirm size, etc. Of course, the sonographer wouldn't tell me anything, but I was watching the whole time and did not see measurements that were anything close to the original. Admittedly, I didn't know what I was looking at--it all just looks gray to me--but I'm optimistic that the left mass is not really as big as believed. However, I have no idea what this would mean in terms of treatment.
I've done a bit more research since the last time I posted, and am surprised and relieved by the benign FNA pathology results. I have so many characteristics of malignancy: microcalcifications, irregular borders, heterogeneous echotexture, internal blood flow, and an enlarged, calicified lymph node with no fatty hilum. I feel 99% sure that the pathology results are accurate, but that 1% bothers me just a tad. Kind of want this thyroid evaluated surgically, regardless of the size.
Glad your FNA came back benign, asm, but I also know how frustrating it is to have to follow these suckers. Ugh, compression symptoms are no good, so I hope you get some answers in your next ultrasound. Keep us updated, and I'll do the same!
So here's the latest. I have an appointment with a surgeon on Tuesday. Not sure if he will recommend a TT or a partial, because the most recent ultrasound did not show the nodule on the right side. The radiologist who wrote the report does not get my vote of confidence, though. When my endo realized that the report did not mention anything on the right side, he called the radiologist, who told him that he did not see it on the ultrasound, but that he thought it was "probably" still there, since it was clearly visible on the first ultrasound. Hmmm. Think that might be important to mention on the report? Especially given that the whole point of the ultrasound was for the purpose of planning surgery? Anyway, I'm super anxious about this appointment and still getting cold feet, off and on, even though my gut says that I need to proceed with the surgery. I have a long list of questions prepared for the surgeon! Hope he's patient...
OK, y'all, surgery is scheduled for November 14. My surgeon and I decided to go with a partial thyroidectomy, removing the left side. The right side will be examined in surgery, and if suspicious-looking, will also be removed. I'm nervous, but also feel 99% certain that I'm making the right decision. My surgeon is a general surgeon, but he does approximately 100 thyroid surgeries per year, so I feel confident. Also, since he's a general surgeon, he feels comfortable handling any potential substernal involvement, although it's unlikely that there is any. Hoping for an easy surgery and recovery and, of course, a good pathology report!