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Just diagnosed with thyroid papillary carcinoma

CJMom
Posts: 9
Joined: Feb 2010

I had a TT on 2-3-10 due to papillary carcinoma. Once I got over my initial feelings of shock and fear, I began trying to learn all I can to better understand the treatment process. My ENT surgeon prepared me for RAI (I've been off levothyroxine since surgery.)He referred me to an oncologist and I meet with him next week.

I've found conflicting information about RAI and I was hoping someone here might be able to comment about their experience. My pathology report says the following:

FINAL PATHOLOGIC DIAGNOSIS A. PAPILLARY CARCINOMA OF THE THYROID
GREATEST DIMENSION: 1.2 CM, CLASSIC HISTOLOGY, UNIFOCAL, TUMOR CONFINED TO RIGHT LOBE
MARGINS UNINVOLVED, TUMOR CAPSULE, TOTALLY ENCAPSULATED, TUMOR CAPSULAR INVASION ABSENT, LYMPH VASCULAR INVASION ABSENT, EXTRATHYROIDAL EXTENSION NOT IDENTIFIED

Also, my ENT surgeon did not say anything about removing any lymph nodes. So how did the pathologist know it has not spread? That's been a major concern because it seems very common.

I am very glad to have found this board. Thanks in advance for any comments and/or support.

alapah's picture
alapah
Posts: 258
Joined: Oct 2009

You should ask for a copy of your surgeon's report. My surgeon's report is where those details about node removal etc were discussed. There actually was a lot of good information in that report. It may be that they did remove a few nodes and tested them (if I remember correctly, my surgeon took 6 and all were negative).

What questions do you have about RAI? Are you wondering if you need to have it or not? or how it is to go through it?

CJMom
Posts: 9
Joined: Feb 2010

That's a good idea about the surgeon's report. I will request a copy tomorrow.

I am interested in opinions regarding RAI and if I truly need it. My doctors have been leading me down that path but there seems to be some question about whether or not it would benefit my situation.

butterfly123
Posts: 52
Joined: Feb 2010

I have heard of a few people that do not opt for the RAI. If you decide not to do the RAI, there is no measurable was to detect recurrent thyroid cancer except for Ultrasound. Thyroid cancer does not always come back into the lymph nodes or neck area. After someone has RAI, all thyroid cells should (hopefully) be gone from the body. Thyroglobulin blood test is then used to detect recurrent thyroid cancer.....thyroglobulin is made from both normal and cancer thyroid cells. So after RAI, any detection of thyroglobulin would typically mean thryoid cancer is back somewhere.

In my situation, my recurrent thyroid cancer was detected by the thyroglobulin blood test. The Ultrasound was negative and continue to be negative. The recurrent cancer is in my bone and lungs.

Good luck and hope everything works out for you. It's a tough decision. I am an usual thyroid cancer case. I also have papiallary and was stage 1 when first diagnosed 5 years ago.

Also agree that you should get a copy of the surgeon and pathology report.

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