Medullary thyroid cancer

Hi,

I'm new here! Always avoided research etc but now feel comfortable to do so! 

I am 25 and was diagnosed initially with papillary thyroid cancer 2 years ago and had nodules on my thyroid but also I’m my lymph nodes in my neck so underwent total thyroidectomy, partial parathyroidectomy and also a left neck dissection. With intention of RAI, however after surgery it was found to be medullary not papillary which which much rarer. Had calcitonin monitored for 2 years and then just this week had to undergo a bilateral neck dissection (both sides) and also central section and thyroid bed as I had reoccurring disease. I have no other option than surgery currently so just have to wait and see what bloods are in the future. 

just wondering if there’s any one else out there that has medullary thyroid cancer as everything I search is based on papillary or follicular. And would be great to speak to some one with the same issues!

TIA!! 

  • Sorry no, but just wanted to say hello and I have only just recently joined the group myself.  

  • Hello no sorry I have no experience of this but wanted to say hi and hope all goes well with your treatment. 

  • Hi - I am from the kidney cancer group but I was touched by your post, entered "medullary thyroid cancer" into the search box and discovered member @kam14  was similarly affected and previously asked the same question, these people  have responded here ->   community.macmillan.org.uk/.../anyone-else-out-there-with-medullary-thyroid-cancer 

  • Hi Hem96

    I am so sorry to hear what you have been going through the last few years.It must've been very tough for you.

    MTC is rare and trying to get information about it can be a challenge but when I was diagnosed about 4 years ago,I found this site invaluable. They were a few people with MTC who reached out to me and were very supportive,informative and kind and really helped me as the treatment is different to other thyroid cancers Their names are , , Dogrose and Former Member.I went through my previous posts to find their names so hope they see your message and can respond to it too.

    I had  a partial thyroidectomy after I found a lump and once an FNA biopsy classified it as thy3.After the surgery there was a long wait for the pathology and I found out that they had found an MTC microcarcinoma in a different spot to where the lump was. I had genetic testing and had to wait for months for the result as I live in Ireland and it had to be sent to the UK.Fortunately it ended up being sporadic as if it had been familial,my teenage daughter would've had to have her thyroid removed as a precautionary measure.

    I went for a second opinion and opted to have the other half of my thyroid removed 6 months later.The pathology was clear with that one.Since then I have my CEA and Calcitonin levels checked and go for an ultrasound once a year.

    My understanding of the treatment of MTC is that it is different to that of papillary or follicular thyroid cancer.RAI isn't used and CEA and Calcitonin blood tests are very important and that surgery plays a big part in the treatment.So I don't think I'm really shedding any new light on the subject for you.  But I just wanted to reach out to you in what must be a very difficult time for you.I do hope that one of the others I mentioned before  responds to you too.

    Best wishes

    Lauren

  • Hi 
    I just saw this thread and thought I’d respond, just for you to know we are a few out there. You can look up my history to get the fuller picture.

    it’s very important to have the genetic test done. You are hound and maybe married or in a relationship, maybe have children. As previously mentioned, if it’s sporadic, it stays with you. But if it’s familial, then your descendants need to be tested, and maybe further back, to parents and siblings. 

    It’s easy to miss MTC, as there are very few symptoms until it reaches a later stage. The blood tests are very important. calcitonin and CEA.

    I have been well since my surgery 6 years ago.

    Wishing you a smooth journey

    Allthe best

    Lis 

    Minouche

    Living in Mexico