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Long term survivors after recurrence?

Posts: 1
Joined: Sep 2013

Anybody out there who is a long time survivor after papillary thyroid recurrence?

I had my TT in 2000, over 13 years ago when I was 23. They found 2/3 perithyroid lymph nodes positive and 9/10 left paratracheal/mediastinal lymph nodes positive. Had radioactive iodine and have been good for a long time. I thought I was cured but at my last ultrasound they saw an abnormal node, biopsied it, and it was recurrent papillary thyroid cancer. I just had a left neck dissection 3 days ago and pathology results are still pending, but I am wondering if anyone out there has been in a similar situation and is a long term survivor? I have a 1 year old son and 4 year old daughter who I would like to see grow up.

Posts: 1
Joined: Nov 2013

c in 2008 i did tt and rai131 but started seeing a thyrod ca specialist about 6 mo after and he says my surgery wasnt ideal bc they only removed the threeobviously enlarged lymph nodes outside the thyroid bed and they were wall to wall cancer, i did not have any other nodes removed so he pretty much has me believing at some point i will experience the same thing you did. So i would love to know how it went? what was your path report? did you repeat rai?  How bad was your surgery, compared to thyroidectomy? sorry so many questions i hope you are well !

Baldy's picture
Posts: 243
Joined: Mar 2011

I haven't had recurrance, but I did have an extensive neck disection (50 plus nodes) at the same time as my TT and can tell you about the surgery and recovery.

The surgery took over 4 hours and I was home the next day, about 24 hours after they wheeled me out of the OR.  I had drains in for about a week and was doing pretty much anything I wanted once they were out.  I have lost some feeling in the area.  I didn't know it until after the surgery, but there are two nerve nets, the skin one which feels needle pricks and temperature and the muscle net which feels movement of muscles and large sensations (like a finger pushing).  The skin net in the area of the surgery (right neck) no longer works, I don't feel hot or cold (for example when I take a shower) or a pin prick, but if I push on the area with my finger I feel that.  I don't have any sagging like from a stroke or something.  I also have no muscle impairment.

There were side effects from the surgery but most are now gone 32 months later.  A short sharp pain (like a little very quick stab) along the scar line that would happen maybe once or twice a day.  A deep itching in the general area that I couldn't scratch, also once or twice a day.  And some minor annoying things like a pulling sensation on my ear lobe on that side every so often.  The itch still happens once in a great while but the rest are gone.

The last two sonograms I've had have shown suspicious nodes, but the one is pretty deep and the surgeon is reluctant to go in for it unless we can positively say I have recurrance.  So I have sonograms every 6 months and see how much (if it all) it grows and if any new ones show up.  I think I probably have residual cancer and will have to have a second neck disection but both the surgeon and my endocrinologist say it isn't certain and to wait and see.


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