Thyroid cancer

Hey there ,

Welcome to the forum, though I'm sorry you need to be here. 

First of all, if you're talking about raised calcitonin levels, then you're probably looking at Medullary Thyroid Cancer. This isn't the bad one, so that's some good news. It's not papillary or follicular that are theoretically easier to treat, but it's not the bad one. 

However, even in saying that, I know people with medullary who have had a much easier time of side effects, treatment, etc than I have with papillary. So the type doesn't necessarily determine how things are going to go. 

But do shout anytime you have questions, need to vent, etc and someone will try and help. 

Lass

Xx

Thank you, dear Lass.

Yes, the doctor did mention the Medullary type.

I made the mistake to google and i was scared to read that this type is connected with metastases and poor prognosis.

This is all very scary and also a shock since the lab that conducted the blood tests told us that everything is within normal (they indicate 16 as max value and my husband has 14,6) so we went to the docs thinking about our vacation jn a month...

I will be in touch.

Thanks again

Heya, 

Yeh, don't Google anything when you're unsure and awaiting test results for anything. You're always always going to find worst case scenarios, and because it's all new then it's almost impossible to tell what's likely to happen and what rarely happens, coupled with what might happen to the one with it based on everything else they have going on. 

As an FYI, the poor prognosis usually attached to things like Medullary is because it usually appears when folks are in their 80's. So they don't last the obligatory 10 years that they measure cancer survival rates in, but it has nothing to do with the cancer. They just got to that time of their lives.

Different labs do have different top and bottom values, but consultants look at everything and put all the puzzle pieces together to see if they can get a complete picture. It can take time though, so patience is def needed I'm afraid. You may still be able to go on your vacation though, did you ask his Dr about that?

I'm just trying to find some usernames of folks with medullary, see if they will pop in and tell you their stories and see if there are any words of wisdom they have to share about questions to ask etc. Give me a min... 

Lass

Xx

,

,

Minouche,

Can anyone offer any pearls of wisdom or advice? 

Hope you're all well? 

Thanks in advance. 

Lass

Xx

Thank you so much!

Hi Ellie78

A scary time for you and hubby, but some good things to mention here. Your doctor was very proactive to test for his calcitonin. (Mine was not tested pre-op). His level is not something I would worry too much about...it just indicates there may be a problem...that being that he may have MTC. Until they take a look, they won’t know for sure. 

This calcitonin test has to be done right. The blood sample has to be put on ice until it is tested. You should always have it tested at the same lab. That way there is a consistency in the way it is done. Also should be done at the same time of day.....

You can read my story and see what happened. 

In the meantime, try and not read too many stories...other than the ones on this site. You haven’t got a definitive diagnosis, and there is very little to be gained by guessing 

Go on your holiday and relax. 

Big hugs and fingers crossed

lis

Hi there!!! Ok, so let me start by saying that although what you read about Medullary is scary, it is a slow growing cancer. My advice to you, if they do find that it is Medullary, and I hope that is not, it is extremely important to find a doctor with experience with Medullary since it is treated differently than the others. With that said, please do not panic if it is indeed Medullary. I know others that have had it for 30+ years and still doing well.

Dear all,

First of all i would like to thank you all for taking the time to reach out with your kind words.

Right now it all seems very scary.

He’s taking the stimulation test today and we’ll have the results tomorrow.

Let’s see what happens next.

Thank you all again,

Me again, with a question to the group members familiar with this specific type of cancer.

What kind of tests did your doctors order, pre or post-op? Did you undergo CT/MRI scans to check other parts of the body?Is there a protocol?

Please mind that we are living in Greece, so it might be different than in the US, but we would like to have an insight on the procedure ahead.

Thanks again.

ps: please excuse grammar mistakes-English is not my mother tongue

Kalimera Elle, 

We're actually a UK based site rather than a US based one, so more likely to have the same procedures and protocols as you. But things here can vary from hospital to hospital, so it wouldn't surprise me if there were differences.

However, even though we're a UK based site, we welcome everyone no matter where they are. So as you probably noticed, Smiley is in the US, and Minouche is actually over in Mexico. Lol. So we're all inclusive here! 

Just wondering though, would you mind editing your profile so that either it or your signature say you're in Greece please? It just helps us remember so we don't tell you something wrong or try and correct what might be right in Greece but wrong in the UK.

Efharisto

Lass

Xx