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Anyone here with Hurthle Cell (Oncocytic) Carcinoma?

Thyroid Cancer | Last Active: 21 hours ago | Replies (69)

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@koh

In my opinion, a second opinion at a cancer hospital might be worth it….why remove half of your thyroid on “the suspicion” of cancer? It seems like false positives are often found so why remove a body part unless a more definitive diagnosis is made? There is a procedure called Radiofrequency Ablation (RFA) that shrinks nodules so you don’t need to remove the thyroid lobe. You would need to go to a doctor who specializes in RFA and they will do a fine needle biopsy to determine if you would be a candidate for RFA procedure. When I went, they sent the specimens out for “Affirma Testing” which appears to have the highest accuracy rate for determining cancer. Mine came back with over 50% chance of Hurthle Cell Carcinoma so I was not a candidate for having the nodule “shrunk” through RFA….I had lobectomy surgery and was diagnosed with Hurthle cell carcinoma. I still think it is always worth any procedure that might preserve a major organ, before removing it.

The doctors ‘Hope” your remaining lobe will pick up the slack and you won’t need to go on medication, however that appears to be not as common of an outcome than we seem to think. I had to start medication and it has been very difficult to get regulated on it. My blood tests often fall somewhere in the normal range, however the side effects are still very difficult; which is why dosages and specific medication can be a very delicate balance.
I was being seen by a Cancer Hospital. Before removing the nodule, I was told that Thyroid nodules are common. They tend to grow very slowly, however if cancerous they tend to grow more quickly. You can often “watch and wait” to see how fast/slow the nodule grows and do a repeat biopsy every once in awhile. Thyroid cancer tends to be encapsulated so it remains in a closed “capsule” in the thyroid. There are types of cancer that are more aggressive, however from what I was told, they tend to be less common. Many normal cells can give false positives for cancer. I had Hurthle cell carcinoma, however there are non-cancerous Hurthle cells in the Thyroid, which can cause false positives with reading biopsies. You ALWAYS have the option for a second opinion; and going to a cancer hospital (if possible) will have another person do the tests and draw conclusions. In my opinion, removing the lobe should be a last resort and only if there is a strong prediction of cancer, or the nodule is causing problems because it can’t be shrunk and is leaning on structures (my nodule was very big). Good luck!

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Replies to "In my opinion, a second opinion at a cancer hospital might be worth it….why remove half..."

Thank you so much for the information. I also feel I should get a second opinion regarding the thyroid nodule that I have before having surgery and removing half of my thyroid being the nodule is considered undetermined of having cancer. I am going to talk with an Oncologist/cancer doctor before I have this procedure done and get his opinion on it. I am not having any real problems with the nodule or symptoms other than my teeth/gums aching or bothering me on occasion. Hopefully talking with a cancer doctor he may make other suggestions or put me at ease. Thank you for the insight/information.