Oh wow, what me??

Welcome to the group @Gtee and sorry I don't have any advice as such, I have Papillary Thyroid Cancer with Tall Cell Variant and still learning 7 months on from diagnosis.  Just wanted to say hi, and hope someone else can help you more who has experience with Medullary Thyroid Cancer.  It comes as a shock indeed as we think it only happens to someone else, then here we are being diagnosed ourselves.

Thanks Petal66 for your message. Very much appreciated 

hope you are doing ok

I am thanks, TT end July, just had RAI recently.  Ongoing problems with my vocal cords, need an operation to rectify due to Cancer damaging one side and voice isn't great since my op, but I feel fine and trying to remain optimistic.  Hope you are ok, I know it can be quite difficult getting your head round things in the beginning.

Tricky to start with but am sure when see specialist next week and can start to make sense of it a bit more 

sounds like you have had a belly full already. Stay strong hey 

You too and the start of the  journey seems to scariest, so keep positive and stay strong x

Welcome to the group Gtee.  I joined the group just before Christmas.  I had TT and left neck dissection in November after being diagnosed with Papillary Cancer.  Being on this forum has been a great help.  It’s good to know that someone else understands what your feeling.

Wishing you all the best with your treatment. 

Hello I was diagnosed with medullary thyroid cancer (mtc) nearly a year ago and it is definitely a lot to deal with and understand. Have you had a calcitonin result yet? The most important thing you can do is make sure your team have experience with mtc as it is very different to other thyroid cancers. Surgery is the most important part and should be done by a very experienced surgeon. I had a thyroidectomy and central neck dissection in April last year and recovery took a while especially getting thyroxine levels right and had issues with parathyroids... I'm now back at work and feeling well. I had a PET/CT scan this week so now waiting for those results. 

1. Very happy to answer any questions. I'm not sure if you use Facebook but there is a uk and worldwide groups which are very informative. Good luck for Monday I'm sure this must be a very difficult and anxious time. Please let me know how you get on. xx

Thanks Casey for your message. Great to know people find this forum useful 

wishing you and everyone well as possible x

Thank the gardener, very good and sound advice. I understand MTC is rare and will ensure have the best hopefully. One worry h have is around the possible genetic links as I have 3 daughters. I am being sent for genetic testing so hopefully that will ella any fears or at least can be dealt with.

I’ll check on the calcitonin results as not aware. So much terminology to get my head around

wishing you well

gtee x

Yes it is rare which is why you must ask your team about their experience. I had to move hospitals to a centre of excellence.

I understand about the genetics as I have 3 daughters too. Thankfully I just recieved the good news that it is sporadic so will not affect them which is such a relief. 

Calcitonin and cea is very important and must be done. Mine was very high before surgery but much lower now. I know it has spread microscopically which it does early so now we watch and wait. It is a hard diagnosis to come to terms with but there are a few drugs and trials which can help to keep it stable.

As I said please contact with any questions. Always here to help anyone so don't feel alone with this.

Nicole xxx