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TIRADS 5 nodule: can’t see endocrinologist for 4 months

Posted by rakreitan @rakreitan, Dec 11, 2023

Hi I just self paid to get an ultrasound that my primary Dr wouldn’t order and they found a Tirad 5 and two 4s. I have a referral to an endocrinologist but their first available isn’t until March 2024 (4 months from now). That feels super risky to me as I likely have a malignancy and have no idea how aggressive it is. Am I right to worry? Any advise would be VERY appreciated!!!!

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koh | @koh | Dec 12, 2023

I was told that thyroid cancer cannot usually be diagnosed without surgery so I don’t think you should panic yet. When you go to endocrinologist, they will probably order a repeat scan which seems like it would be a very good way to see if there have been any changes. Removing the thyroid for small issue that “ MIGHT” be malignant, seems like an unnecessary risk. If the nodule is large enough to do a biopsy, you might want to ask the endocrinologist if they can submit the slides for Affirma testing. From what I understand, the Affirma testing has a very high accuracy rate for predicting cancer. Good luck!

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1 reply
504branchie | @504branchie | Dec 12, 2023

Did you have a fine needle aspiration (FNA) to test the tissue? That would be a good next step. If you doctor cannot see you, keep searching for one that can. I would not wait. I found out that I had a nodule as well, followed up within a month with a FNA, it showed Oncocytic (Hurthle) Cell Neoplasm which they would not be able to tell me if it was cancerous until I actually took the nodule out. I had a Total Thyroidectomy down at the Clayman Thyroid Center in Tampa because they could take me within 6 weeks and my docs at home said it would be 3 months before they could schedule surgery. Glad I went as it was Oncocytic Carcinoma. Still going through follow up blood tests and have CT scans of my lung and neck this week at Mayo.

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2 replies
rakreitan | @rakreitan | Dec 13, 2023
In reply to @koh "I was told that thyroid cancer cannot usually be diagnosed without surgery so I don’t think..." + (show)
@koh

I was told that thyroid cancer cannot usually be diagnosed without surgery so I don’t think you should panic yet. When you go to endocrinologist, they will probably order a repeat scan which seems like it would be a very good way to see if there have been any changes. Removing the thyroid for small issue that “ MIGHT” be malignant, seems like an unnecessary risk. If the nodule is large enough to do a biopsy, you might want to ask the endocrinologist if they can submit the slides for Affirma testing. From what I understand, the Affirma testing has a very high accuracy rate for predicting cancer. Good luck!

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Thanks for your answer! I’ll definitely look into the Affirma testing.

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rakreitan | @rakreitan | Dec 13, 2023
In reply to @504branchie "Did you have a fine needle aspiration (FNA) to test the tissue? That would be a..." + (show)
@504branchie

Did you have a fine needle aspiration (FNA) to test the tissue? That would be a good next step. If you doctor cannot see you, keep searching for one that can. I would not wait. I found out that I had a nodule as well, followed up within a month with a FNA, it showed Oncocytic (Hurthle) Cell Neoplasm which they would not be able to tell me if it was cancerous until I actually took the nodule out. I had a Total Thyroidectomy down at the Clayman Thyroid Center in Tampa because they could take me within 6 weeks and my docs at home said it would be 3 months before they could schedule surgery. Glad I went as it was Oncocytic Carcinoma. Still going through follow up blood tests and have CT scans of my lung and neck this week at Mayo.

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Thanks for talking to me. No I haven’t had a FN biopsy yet. Yesterday I spent the day trying to get a referral to an ENT so that I could get a biopsy before next year. I think I found someone so, small victory I guess. I assume that if it comes back cancerous I they will expedite further care. I hope I’m right. I’m in Texas and while there’s no shortage of doctors and hospitals in my area very few of the good ones will take my insurance. I had to self pay just to get my ultrasound as my primary doc wouldn’t do it.
I’m so glad you pushed and got your surgery! You’ll be in my thoughts and I hope your scans come out all clear.

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leeirvine61 | @leeirvine61 | Jan 6 2:07am
In reply to @504branchie "Did you have a fine needle aspiration (FNA) to test the tissue? That would be a..." + (show)
@504branchie

Did you have a fine needle aspiration (FNA) to test the tissue? That would be a good next step. If you doctor cannot see you, keep searching for one that can. I would not wait. I found out that I had a nodule as well, followed up within a month with a FNA, it showed Oncocytic (Hurthle) Cell Neoplasm which they would not be able to tell me if it was cancerous until I actually took the nodule out. I had a Total Thyroidectomy down at the Clayman Thyroid Center in Tampa because they could take me within 6 weeks and my docs at home said it would be 3 months before they could schedule surgery. Glad I went as it was Oncocytic Carcinoma. Still going through follow up blood tests and have CT scans of my lung and neck this week at Mayo.

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I have also been diagnosed with Herthle cell neoplasm through having a FNA. I am seeing an ENT on 11 January. I am hoping it's not malignant.

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1 reply
Lynne Marie | @lbrockme | Jan 6 9:39am

I am hoping that for you as well!!

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trosborn21 | @trosborn21 | Jan 7 8:18am

Yes… worry is normal! I was diagnosed in early October and still have not had my surgery yet! I have so much anxiety. My mom (best woman in the world) passed shorty after Thanksgiving of brain cancer.. so this diagnosis hid my hard as the death of my mom did… does💔

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 13 3:56pm
In reply to @leeirvine61 "I have also been diagnosed with Herthle cell neoplasm through having a FNA. I am seeing..." + (show)
@leeirvine61

I have also been diagnosed with Herthle cell neoplasm through having a FNA. I am seeing an ENT on 11 January. I am hoping it's not malignant.

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Welcome @leeirvine61, you may also be interested in this related discussion:
- Anyone here with Hurthle Cell (Oncocytic) Carcinoma?
https://connect.mayoclinic.org/discussion/anyone-here-with-hurthle-cell-carcinoma/

How did the appointment go last week? What did you learn?

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