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Question of aggressive papilary carcinoma

Mangel
Posts: 2
Joined: Jun 2017

 So here's my question has anybody else experienced where the doctor could not get all of the tissue out of your neck because it was more aggressive? I was diagnosed with papillary carcinoma and after that I had my right side of my thyroid taken out during that surgery the physician noticed that it was  much more aggressive and that he could not get all of the tissue out, after I came out of the surgery we discussed taking the other side out just to be safe and I went forward with it so I am now without thyroid at all and I'm waiting on my follow-up ultrasound because my cancer markers were good and my TSH levels were good however I'm a little bit nervous about what I heard after that first surgery. Has anyone else had this?

emilyk1978's picture
emilyk1978
Posts: 1
Joined: Jun 2017

Hi there! I had aggressive papillary thyroid carcinoma - I had my entire thryoid removed, but the doctor couldn't get all the tissue out for me, either. The cancer had broken through the thyroid capsule and was in the parathyoid glands and some throat tissue. Also had some lymph node involvement. Depending on your thyroglobulin level, you will possibly need a dose of I-131 to kill any remaining tissue. I required several doses, but now I've been cancer free for 7 years! Stay strong - you will beat this!!

-Emily

seaweed82414's picture
seaweed82414
Posts: 2
Joined: Jul 2017

Emily you rock! I too have been evaluated with an aggressive papillary thyroid carcinoma-lymph node involvement, throat issues. Your posting was just EXACTLY what I needed to read today. I am headed to Mayo Clinic on Sunday-surgery on Tuesday. #emilykismyguidinglight

nwerle
Posts: 6
Joined: Feb 2018

thanks for info

alapah's picture
alapah
Posts: 287
Joined: Oct 2009

I'd just add the obvious, I suppose, but as it has been identified as an aggressive form I'd urge you to keep on top of monitoring it as the docs recommend (ultrasound, scans, however they see best). 

Melo0576's picture
Melo0576
Posts: 10
Joined: Apr 2019

I had a similar experience and was glad I found this post. I had hurtle cell and papillary thyroid cancer that was aggressive. My last sonogram showed three microscopic nodules that ranged in .3 and .5cm, 7 months post RAI. I have a pet scan scheduled for 6 months from today. From what the specialist told me, “thyroid medication suppresses further growth of cancer. Hope everything worked out for everyone in this post.

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