Anyone here with Hurthle Cell (Oncocytic) Carcinoma?

No I never heard of that testing but I can definitely ask Wednesday when I go and meet with surgeon. Thanks for all the info . I started looking into the meds and from what I'm seeing is the natural is better than the synthetic with fewer side affects. I wish you well and hope they can get your meds correct for you to start feeling better

Did they do “Anfirma testing?” From what I have read, biopsies with Affirma testing have the highest probability for accuracy. ….I heard about this when I went for FNA to determine if I was a candidate for Radio Frequency Ablation. In my opinion, if there is a test that has high probability for identifying cancer, I would have the test done before making a decision about surgery. Removing your thyroid, or part of your thyroid, is sometimes necessary, however removing the thyroid and finding out it was a benign nodule that might have been able to be shrunk would be very disappointing. It seems like a lot of people do well taking thyroid medicine, however after a lobectomy, I am having a lot of difficulty with the side effects from the small dose of medication, or the hypothyroid issues…..I don’t know which is causing the issues. I have had several medication changes and dosage changes, however side effects have been very difficult.
Good luck!!

I was just told that they are high suspicious that i have it but my biopsy was inconclusive

Something to mention again….if you decide to try and shrink the nodule with RFA, the doctor does a fine needle biopsy first to determine if you are a candidate. Having a second needle biopsy isn’t necessarily a bad thing and it can give you more information. The doctors who do not do RFA might not recommend it and just think surgery, so research your area. Good luck!

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.

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!

I am scheduled in July for a Hemi-Thyroidectomy, because of an abnormal nodule on the left side of my Thyroid. I had a Fine Needle Aspiration done, and the results came out inconclusive or abnormal. My question is, what should I expect after the Hemi-Thyroidectomy. My ENT made it sound as if nothing would change with my body, and I probably will not have to take any medication afterwards unless they find that my nodule is cancerous. Second question, would you have a second Fine Needle Aspiration done, for a second opinion/diagnoses, before going ahead and removing half of the thyroid on a "maybe" it's cancer, but probably not cancer. Has anyone gone through with having half of their thyroid removed, and if you did, were there any side effects that I need to know about? Thanks for you help with my concerns.

@ahren2016, I can imagine you’re both shocked. Have you been able to make an appointment for a second opinion? How are you doing?

Husband diagnosed in August. Radical neck dissection in September, nodes involved as well as soft tissue. Being treated with TSH hormone, keeping numbers as low as possible, also having his markers checked and this time they came back elevated. Doctor ordered CT scan with contrast and nodules 8mm and smaller showing in his left lower lung. Doctor states that a PET scan would not show because nodules are too small so wants to rescan in April to see if there is growth. We have registered at another university for a second opinion on the care plan.

Good luck and please keep me posted.

Husband was diagnosed in August needle biopsy showed papillary but thyroid tested for Hurtle Cell during pathology. Radical neck dissection in September, now there are small nodes showing up in left lung. Doctor suspects mets but states nodes are too small for PET scan. We are shocked! Going for a second opinion and care plan.