Thyroidectomy or not?

I was told that cancer can’t be definitely diagnosed until you have surgery. The dr told me that one of the signs is that the nodule grows fairly quickly if it is cancerous so waiting a little while to see what happens seems reasonable. Did you have Affirma testing done when you had biopsy? Maybe radiofrequency ablation (RFA) is an option to just shrink the nodule. You need to go to a doctor who does RFA to see if you are a candidate. When I went, the doctor did a FNA and sent the slides for Affirma testing. Affirma testing has the highest rate of accuracy for predicting cancer. Mine came back with 50% chance of Hurthle cell carcinoma so I did not qualify for RFA….. I had lobectomy and was diagnosed with Hurthle cell carcinoma. In my opinion, it is better to explore non surgical options ( RFA) first and try to hold on to thyroid….. getting regulated on medication can be difficult. Good luck!

I would want the poison out of me. I had 1/2 my thyroid out because it was hard and inflamed, no cancer. It's not a big deal. A friend had the cancer spread to her lymph glands. Just do the surgery to be safe. You will be fine.

I think you were very fortunate. My nodule was very large and was crushing into other areas which definitely can cause issues, however, surgery is not always as easy as you describe. Voice and swallowing issue can occur, so surgery seems like it would be the last option. Every case is different, however if the nodule is growing slowly, why not try non surgical methods? Removing organs “just in case it is cancer, “ can result in having to take thyroid medication for the rest of your life and it is not always very easy to get regulated. I ended up with diagnosis of HCC, however I have not been able to get regulated on medication yet and the side effects of the situation have been very difficult. I am confident that I will get regulated and feel better, but this long road just reinforces my opinion that people should only have surgery if they have fairly strong evidence that it is necessary. Radio frequency ablation seems like an Excellent option for SOME situations and would enable a person to keep their thyroid.
I am sorry to hear about your friend’s malignancy, however each case is different.

I don't take thyroid medicine after the surgery. A biopsy will be taken to see if it is cancer for you.

You are very lucky that you don’t need to take medicine… yet. As with anything, for sone people getting regulated on medication can be easy and for others it can be quite challenging. Since I am having a very hard time getting regulated on medication, I think people should have very strong evidence that they have cancer before opting for surgery.. I was told that biopsies do not diagnose cancer they are only one more test to help predict if you might have cancer. However, Affirma testing with the biopsy has the highest rate of accuracy for predicting cancer and might enable someone to avoid removing part/ all of the thyroid unnecessarily. In my case. I had a biopsy that indicated I might have cancer however the second opinion biopsy did not indicate cancer. During the years of monitoring, several more biopsy’s were negative. When I went to be assessed for RFA the doctor did a biopsy and sent the slides for Affirma testing…. The results gave 50% chance of having Hurthle Cell cancer and that is what was discovered when I had surgery.. Before having surgery to remove an organ, it seems like Affirma testing should be done so the person has stronger evidence about the situation. Since they now have Radio frequency ablation as an option to shrink non cancerous modules, why not consider it?

My Mother had thyroid issues so I didn't want to play around with it. The surgery is quick - 2 hours, 1 hr recovery and you are home. I didn't want to play around with a defective organ that is so important and the 1/2 that is left is working fine. It's your call and everyone is different. I'm a "just get it done" person. No scar either.

I would say don’t dance with the devil. They cannot make a definitive diagnosis until they evaluate the entire goiter/ tumor upon removal. At this point it’s only a probability of ID. Mine was missed in 2019 at 4cm based on a presumptive ID and low probability (which is very subjective). It doubled in size in 4 years and the presumptive ID of follicular by one laboratory and oncocytic/ Hurthle cell carcinoma by another and was rated as 40-60% probability by 2 different laboratories with a comment it was unlikely a carcinoma and more likely an adenoma because that type was so rare and I had no family history . Upon removal it was confirmed as just that by 3 different laboratories. If they had done their due diligence in 2019 I might have been able to get a partial thyroidectomy and avoided medication which is causing all kinds of side effects. Although papillary is the “best” of the thyroid cancers to have I personally wouldn’t leave cancer in my body but I’ve also been a laboratory scientist 24 years so I understand the meaning of the results and the risk of metastasis. In the end it’s your decision but if you leave it it will grow and you may have to take the whole thing out.

Thank you for this.

I had them take the whole thing. The pathology is back, confirming the
1.5cm nodule with NO cancer on the margins, no spread to any nodes---so,
they 'got it.', it would seem, which of course is great. No regrets (as it
wouldn't matter) re holding out for a lobectomy though in retrospect it
sure appears that might save me the medication not to mention the
possibility of radioactive iodine treatment, which I still hope to avoid.
I hope this fretting and thinking is of some value to those who are
contemplating action. I am supposing I 'got lucky' with the contained
nodule. The surgeon certainly did a clean job. Only pain is the
to-be-expected sore throat from the damned air tube.

Best to all out there.

Hugo

Everyone reacts differently. When I was diagnosed with medullary cancer the endocrinologist thought it would be simply a removal of the thyroid. Turned out it had spread throughout the left portion of my neck and I ended up with a 7 hour modified neck dissection. Every portion had to be “skeletonized” …I had zero symptoms and a small nodule on the thyroid.

Wow. Thank you. Counting my good luck here.