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Anyone here with Hurthle Cell (Oncocytic) Carcinoma?
Thyroid Cancer | Last Active: Jan 19 8:13am | Replies (62)Comment receiving replies
I'm trying to help my parents get some answers.
My dad had been having some leg pain for a few months, being a man and stubborn he wouldn't go to the doctor. He ended up having a fall and thankfully he wasn't hurt but that finally pushed him to go get his leg checked. After an X-ray they said they saw a spot on his right femur and wanted him to have a CT. After that scan I feel like everything went in warp speed to where we are today. The CT pushed his primary care physician to contact an orthopedic oncologist. They then ordered an MRI. His primary care physician wanted to do blood work, a chest x-ray, and an EKG while waiting for those results. After the chest x-ray, they saw spots on both lungs. We met with the orthopedic oncologist on 10/12 and he wanted to do surgery on his leg on 10/18 because his bone was weakening. He had a PET scan on 10/17 and surgery on 10/18. They put a rod in the right femur to stabilize that bone. The PET scan showed thyroid, both lungs, and right femur as having disease in them. They did a biopsy of the thyroid while he was in the hospital last week with the leg.
We did meet with a medical oncologist yesterday who had a report from the pathologist that says he has metastatic thyroid carcinoma that represents as follicular/hurthle cell carcinoma.
Other than the leg pain he has had no symptoms. No cough, no hoarseness when he talks, nothing to make us think he's even sick.
We didn't get the warm and fuzzies with the oncologist we saw yesterday and that's ok I don't expect a doctor to be our friend, but I think we're more confused now than we were prior to meeting with him.
He did say it's not a large bulk of cancer, which is good, and he said he does believe all spots (lungs and leg) are thyroid. But he said he doesn't treat this type of cancer. He would refer him to an endocrinologist, and he would play quarter back between the doctors. I guess my question is, is this normal? Or is there an endocrinologist oncologist? I guess I'm trying to figure out do we need a quarter back?
Replies to "I'm trying to help my parents get some answers. My dad had been having some leg..."
@melijord95
Wow! It is amazing how a pain in the leg can lead you down a path that gets diverted to other issues….your father is lucky to have finally gotten treatment and the issues were discovered. Although I think ENT’s must have experience with thyroid cancer, since Hurthle Cell Carcinoma is considered fairly rare, you might benefit from going to an ENT who has significant experience with this type of thyroid cancer. In my opinion, it might be helpful to have someone on your oncology team with significant experience with this type of cancer; the doctors you are using might have this but it is worth asking. If you live near one of the big cancer hospitals, they might be able to give you the name of someone.
When reading about Hurtle cell carcinoma, there seems to be changes in how they treated it. It seems like they used to think Hurthle Cell Carcinoma of the thyroid gland required complete thyroidectomy, however now there are SOME situations where a lobectomy can be done in stead of a complete removal.
I view Hurthle Cell Carcinoma as a “sneaky” cancer. It seems to start in the thyroid gland but has the ability to travel through the circulatory and lymphatic systems to cause problems in other places. In my opinion, having a doctor who has a lot of experience with this type of cancer is advantageous so they will be able to recognize if a new issue crops up that could be related to Hurthle Cell Carcinoma spreading. There are so many new ways to treat cancer so having someone with Hurthle Cell Carcinoma experience might help pick the least invasive most successful treatment.
Good luck!
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Hello @melijord95 and welcome to Mayo Connect. It sounds as if your family is dealing with some unexpected health issues. I can understand your need for information and support.
While I do not have the specific type of cancer that your dad has, I do have a rare, hormone-related cancer, neuroendocrine tumors, so I do understand the need to have an endocrinologist as a quarterback. I have an endocrinologist as well.
Endocrinologists are amazing doctors who have a knowledge of the body systems and are a great addition to the rest of your dad's medical team. The endocrinologist that I see works well with my other specialists and she explains to me what is going on and how the various systems work together. This type of specialist will undoubtedly be an asset to you and your family.
How is your dad doing post-surgery?