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abnormal lymph nodes after RAI treatment

hydro
Posts: 2
Joined: Jan 2011

I have thyroid cancer and have had a total thyroidectomy and ten lymph nodes removed. I had the RAI treatment and then had the whole body scan done. The radiologist findings was lymphadenopathy, (abnormal lymph nodes), due to functioning thyroid neoplasm (tumor). There was intense uptake in the neck area. My endo said that he would wait three months and do some more testing. I also have an ultra sound scheduled by the surgeon for the 24th of this month. Has anyone had these findings or something similar and been fine? I'm really concerned. This has been hanging over me for over a month.

diane2h81's picture
diane2h81
Posts: 41
Joined: May 2010

I haven’t had exactly the same and I’m still in treatment. When I had my TT in May they found that the tumor had multiplied in the right side of the thyroid and one of the lymph nodes removed was found to have cancer.
After my radioactive iodine treatment the scan showed some uptake in the neck (a few different areas). When I was explaining this to my sister she got upset (sad) that there was still cancer in there. But I explained to her the reason it showed on the scan was because the radiation was in there killing the cancer cells. I hope that makes sense.
A lot of this is a waiting game. You will have to wait and see what your lab work shows during your follow ups. And believe me, I know telling someone to wait is a lot harder than doing the waiting. I’m there myself, I hate waiting.
I know that my cancer is still there somewhere and I’m 7 months out from radiation. But once we find where it is we have a game plan. Surgery to remove it and more radiation if needed.
Just stay informed, and make sure your doctor knows you want to know everything. Once I told my doctor that and asked lots of questions, she tells me everything and copies all my labs for me without me asking anymore.
Keep your chin up and stay informed. Lean on those around you.

hydro
Posts: 2
Joined: Jan 2011

Thanks Diane! I appreciate the feedback. I hope all goes well with you and your treatments. Did you by chance start gaining weight after the RAI treatment? I have gained about ten pounds that is not explainable. Just wondering. I have all the symptoms of hypothyroidism, but the doc checked my labs and said I was fine. I have been dieting and watching what I'm eating and still I'm gaining weight. This is all just very frustrating.

Thanks for posting!

diane2h81's picture
diane2h81
Posts: 41
Joined: May 2010

I didn’t gain weight but was the opposite and lost. The low iodine diet did a number on me and a lot of things affect me different than others. I have gained some of my weight back but it has been difficult since I am Hyper. From all that I’ve read and heard from others, weight gain is the norm. And you may still be a bit Hypo right now which would help explain. If you don’t have a copy of your labs I would suggest getting them and checking you TSH and T4 level. Your Doc may still be working at getting you to the right level of Synthroid. And the why my doctor explained things is that I should be slightly Hyper to help suppress the TSH level and thyroid/cancer cells.
One thing that happened to me when I started taking Synthroid is that I maintained a lot of water. My belly swelled so much that my oval belly button turned into a straight smashed line. The swelling went away in about two weeks. So watching salt/sodium intake my help.
And it is frustrating, all of it is. Sometimes wish there was an easy button to push :)

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