[30M] Thyroid/Neck ultrasound results. Should I be worried?

Hi Drid, keep positive as much as you can, have the biopsy, ct scan and take it from there, are you someone that worries and overthinks? Fingers crossed for you. 

Hi drid,

I'm sorry to hear you are going through this. I'm not medical so can't interpret the results sorry but there are some experienced people on this forum who may be able to help.

The collation of the test results is the worst time, the waiting seems endless. Of course you are worried! I'm not even going to say anything like try not to worry because I know from experience that's just not possible. Just know we are all thinking of you and hoping for the best possible outcome x

They have confirmed Papillary Thyroid Cancer present in my lymph node which they biopsied. This is scary but I am seeing the prognosis is very good for this type of cancer... Anyone with experience have any advice?

They have confirmed Papillary Thyroid Cancer present in my lymph node which they biopsied. This is scary but I am seeing the prognosis is very good for this type of cancer... Do you have any advice?

I think sometimes I am. They confirmed papillary thyroid cancer.. Have you dealt with thyroid cancer already? Do you have any feedback or advice for me?

I'm sorry about your diagnosis drid. I have the rarer medullary thyroid cancer which is treated differently to papillary as it doesn't respond to iodine radiation.

I had a total thyroidectomy and bilateral neck and chest dissection as mine had spread to lymph aswell. You might have a similar op but I'm sure someone will reply who's had the same cancer as yours and can advise you better than I can. All the best x

Hi 

well I was diagnosed 2 years ago.  Had an op to remove the thyroid and some lymph nodes.  It was scary - I hate needles etc etc but am much braver now.  I had 2 lots of radio iodine- so much less horrible than most cancer treatments. Now I am on 6 monthly checkups.  

my husband has a rare bowel cancer and compared with this mine has been a breeze.  Pretty scary but a breeze. 
I hope things don’t take too long for you to get sorted.  Take it day by day and know that in the world of cancer our papillary thyroid version is statistically better than many. 
marry Christmas! 

My mum had Anaplastic thyroid cancer, it was only 12 weeks from diagnosis to mum passing, papillary is not as aggressive as what mum had, mum was very positive and said she would do any treatment they asked her to do, been positive did help getting through each day, all I can say is, if you want to do the treatment grasp it with both hands, be positive and fight it, make memories with your family and friends, take each day as it comes, I know it sounds corny but it’s true, here if you need to chat, sorry it’s taken me awhile to get back to you. 

hi. new to this forum. My sister also has the rare MTC- do you agree there seems to be so little known about it! every doctor she goes to see seems to have no clue..it is worrying. She was told her cea markers are set that they shouldn't go above 10 band shes always around 7-8 but today was told they should be set at 4? so if over what on earth are they doing?   It seems like never ending pattern of 3 monthly tests, her calcatonin level has gone up from 157 to 201 today too..... 

Hi Bagpuss1,

I'm so sorry to hear your sister also has Medullary TC. I'm glad you've joined the forum though, as I've found it's helped me in many different ways. I also joined the head and neck forum too, as there are some similarities in the surgeries that people have kindly been able to help me with. There are also a dozen or so of us with MTC at various stages that pop up occasionally when Medullary is mentioned. My daughter found the dedicated face  book group helpful for her but I'm not on face  book.

But I do agree there isn't so much info available as it is rare but I think all the more reason why we should only take advice from a specialist, not the GPs. When you say “every doctor she goes to see” … do you mean she's not under a consultant now? I am lucky to live only an hour away from a specialist centre and the first consultant I saw (who got the MTC diagnosis through) very quickly referred me over to the Medullary specialist consultant/surgeon there. He's brilliant and the only person I trust along with his team.

I'm only 8 months from diagnosis, so I'm on a steep learning curve about the TSH, T3 T4, calcitonin and CEA figures! All I can tell you is what he told me, everyone's baseline figures are different and will generally undulate somewhat over the months, it's the doubling of the calcitonin figure that initiates the scans to check what's going on. My calcitonin went from 4940 pre-op to 17.3 post surgery! And then 21, which my consultant was very pleased with. Sorry, I don't have my CEA figures and I'm not even sure what those should be! He must be happy with them too! So can't help you there. I'm going to check all that in my next appointment with him in March. He's the only one I trust to do my regular TSH, T3, T4 test and adjust my Levothyroxine. I've been going to the hospital for that every 6-8 weeks, there's no way I'd trust my GP with that now. It's specialist knowledge for a rare cancer.

Hopefully someone with more knowledge of the CEA figures will pop on and help you soon and hopefully point you in the right direction. I do hope some of that has been helpful anyway.