I had a partial thyroidectomy in May 2011 and pathology showed Papillary Follicular Variant, so I had the other half of my thyroid removed in Aug 2011. I immediately noticed that my swollen neck had returned to normal after my second surgery. About 6-8 months later, I woke up and noticed my neck was swollen again. I went to the ENT who did my thyroidectomies and he said ultrasound showed I had an 8 cm lymph node...however, he said they don't "get concerned" until a lymph node is 10 cm and up. He said to "keep an eye on it" and sent me on my way.
Since then, I've been to my general practitioner several times since and, while she did not repeat the neck ultrasound, she has done tubes and tubes of blood work that all came back "normal." A week ago, I started going to a new endocrinologist who was very concerned...not only about my swollen lymph nodes (he found at least 2, in zone 1 and zone 2), but that my original endo did not make me have iodine radiation. (He had told me I had a 50/50 chance of it coming back whether I had the ablation or not and said "it doesn't matter either way" so I chose to not have it).
I am now 5 days into my preparation for a full body scan, followed by RAI. My concern now is that in the 5 days I've been off my Synthroid, my neck lymph nodes and throat are killing me! It's constant tightness and pain in both areas. I've also noticed over the last few months, I've had twinges of pain and tightness in my axillary and groin lymph nodes...and increasing occurrences of night sweats that wake me up. I can't wait 5 more weeks like this...and if I have cancer in my lymph nodes, is there any way to find out before the full body scan?
I assume you meant 8mm not cm....
Level 1 nodes (under the chin) are usually not from thyroid cancer. Level 2 nodes (under jaw) are sometimes thyroid cancer, but more commonly due to dental/sinus issues. Acne would be another cause of nodal enlargement in these areas.
Regarding RAI - would review the original pathology report before deciding if and how much RAI to give -- current guidelines suggest using RAI sparingly and most FVPTCs are cured with surgery unless there is documented nodal involvement or other spread outside the thyroid. Also - we usually use thyrogen for such testing/treatment rather than stopping thyroid meds. Axillary and groin nodes would not be involved with thyroid cancer -- this may need separate evaluation.
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