Anyone here with Hurthle Cell (Oncocytic) Carcinoma?

Im so sorry you are going through this, Tg level does depend on a lot of things, and I don't think it has to be 0. But I would find another Dr that knows about thyroid cancer, as my endocrinologist and team treat a lot of thyroid cancer and that's what you should have for the best care. Hang in there.

Wow…I think you should get another doctor! My friend had Melanoma that Metastasized to her lungs and she was able to be treated and is currently “Cancer free.” Although all cancers are not the same, my Dermatologist told me that the use of infusions for treatment have been a game changer. Do you live near any of the cancer hospitals? Maybe a doctor affiliated with the hospital who specializes in lung cancer treatments would be a better route. Although the lung cancer might be a secondary cancer, the lung specialist might know the best way to fight the cancer since it is in the lungs. I don’t think you should wait for your doctor; definitely find a doctor who can see you right away, so you can start treatment and put your mind at ease.
Good Luck!

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.

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.

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

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.

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!