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Possible Recurrence

jen7724's picture
jen7724
Posts: 1
Joined: Jun 2012

For starters, I'm a new member and this is my first post. Thank you for taking the time to read and respond.

HISTORY
I was diagnosed as hypothyroid in 2005 at age 23. My doctor immediately noticed a large mass in my neck and an FNA was performed. I was told it showed cancer cells in the right lobe. In December, 2005 I had a partial thyroidectomy to remove my right lobe. I begged the doctor to remove all of it while he was in there but he said there was too much liability involved so he left the left lobe intact. Pathology came back on the right lobe (I was told it was malignant) and they scheduled me for a total thyroidectomy and removed the left lobe.

About 6 weeks later I had a scan which showed remaining tissue so I was treated with RAI. Follow up scan showed that there was still tissue remaining so I went through RAI treatment a second time. I believe it was 2007 by the time I finally got the all clear.

(Side note, I was diagnosed with Lupus in 2010).

So here it is now 2012 and my Tg levels have been undetectable all this time, until now. I believe they were .6. Being that they were undetectable for 5 years Endo was concerned and sent me for a neck ultrasound. Ultrasound showed "area of possible thyroid tissue regrowth or tumor recurrence in the right thyroid bed." Endo wants to give Thyrogen injections and do uptake scan next.

CAUSE FOR CONCERN
I have long forgotten about my thyroid and any diseases it carried and wanted to refresh my memory on my diagnosis since it was obviously still there so I pulled out my medical records and started reading. I found my pathology reports and was shocked at what is on them. I still can't interpret these reports completely and was hoping some of you would be able to help:

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"FINAL DIAGNOSIS:
A. "MASS OF THE INFERIOR NECK", BIOPSY:
-LYMPH NODE (ONE) SHOWING REACTIVE LYMPHOID HYPERPLASIA. NO METASTIC TUMOR SEEN.
B. THYROID, RIGHT LOBE:
-LYMPHOCYTIC THYROIDITIS CONSISTENT WITH HASHIMOTO'S THYROIDITIS.
-ATYPICAL NODULAR EPITHELIAL PROLIFERATION WITH FOLLICULAR PATTERN AT THE INFERIOR
POLE OF THE THYROID LOBE. SEE COMMENT 1.
-ATYPICAL NODULE WITH FOLLICULAR PATTERN. SEE COMMENT 2.

COMMENT:
1. The 1 cm nodule located in the inferior pole, well demarcated and incompletely
encapsulated has a follicular growth pattern arranged in microfollicles lined by
cells with eosinophilic cytoplasm, nuclei with fine granular chromatin and an
occasional groove. The nodule extends to the anterior inked margin. A nodule with
similar cytological features is noted in slide 9.

The differential diagnosis for this 1 cm nodule includes follicular/oncocytic
neoplasm, papillary carcinoma and component of nodular Hashimoto's thyroiditis.

2. Slide 7 shows a 0.6 cm nodule with follicular growth pattern and cytologic
features suspicious for papillary carcinoma. Slides 6 and 8 show a nodule with
similar features. Slide 5 shows a small focus suspicious for papillary carcinoma.

This case will be forwarded to the Armed Forces Institute of Pathology for Consult.

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Again, I was only told that I had Hashimoto's, Papillary Carcinoma and a multi-nodular goiter. My doctors never once told be any of what is mentioned on this report. It was so confusing that the pathologist couldn't even settle on a diagnosis so he sent it to AFIP for a second opinion. I have their report too so I can post their findings if requested but I've written a book so far so I don't want to totally overdo it. They used the word "interesting case" in their report however and it was seen in staff conference. The critical thing to note here is all of this was the Right lobe. The pathology on the Left lobe came back only as Hashimoto's Thyroiditis. The tissue the radiologist picked up the other day is on the Right side so obviously I'm concerned and now trying to dissect my initial reports to try to figure out why it came back. From what I've gathered it looks like I actually had a Follicular Varient of Papillary Carcinoma but also with Hurthle Cells. The Hurthle Cells would explain why it's still there. Again, I was never told any of this by my Doctor.

I have chosen to seek diagnoses and treatment at the Mayo Clinic instead of my Endo here simply because I don't feel like I can trust my Endo at this point. My apt at the Mayo Clinic is July 18. If anyone has any interpretation of my pathology report to give me some clue at what my initial diagnosis should have been that would be very helpful to me. If there's anyone who has has a similar diagnosis or experience I would love to hear about it!

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