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Thyroid cancer

A place for people affected by thyroid cancer to support one another, ask questions, and share their experiences.

hi just been diagnosed with a rear form of hormone thyroid cancer

Myabee
Posted by

Hi dose enyone know what kind of rear hormone thyroid cancer my consultant is talking about as he told me over the phone and am just getting over the shock 

  1. Myabee
We all have the strength in us to fight we just need to find it .
Minouche
Posted by

Hello Myabee

You should go and see your doctor to discuss this.
There are a couple of possibilities, but if it should be Medullary, then you should ask for the blood test that gives you your calcitonin levels. This is very important so you know your starting levels for future monitoring. Its rare but very slow growing, and there are a few people on here who have it. 
Please get back to us when you have more information. Also fill in your profile so we can see where you are in your journey.

Happy to help

Minouche

Living in Mexico

Myabee
Posted by

I have an appointment on 25th with consultant and will be going for surgery soon .that did blood test and said that I had a high level of abnormal cells in blood .thanks for your reply 

  1. Myabee
We all have the strength in us to fight we just need to find it .
Minouche
Posted by

Hi Myabee

So If you had a high calcitonin level it means you have MTC ( medullary thyroid cancer). It is very important that you find out if your surgeon has dealt with many MTC patients. The surgery is important And also after care. Are you currently in the UK? There are specialists in this type of cancer. You should try and get a referral to a specialist unit.

Good luck

Minouche

Living in Mexico

Myabee
Posted by

Hi minouche yes I am in Scotland .I haven't met my surgeon yet .thay changed my surgeon when they found I had this rear hormonal cancer so I have yet to meet the new surgeon thanks for the advice I will be asking him about his history with MTC patients. I haven't got a clue about any of this.and don't know who to ask so any advice is much appreciated 

  1. Myabee
We all have the strength in us to fight we just need to find it .
Minouche
Posted by

I’ve just accepted your friend request. There are a few of us (MTC) on here, and I will happily put you in touch with them. Not many post on here. I’m about 4.5 years post thyroidectomy and neck dissection. You can check my profile.

One other thing you should ask your consultant and that is to have a genetic test done. MTC can be hereditary and depending on your test, your children may need testing too. If it turns out you are sporadic, then it just stays with you. Email me any other questions, I might miss something you ask on here.

Keep smiling, you’ll get through this

Minouche

Living in Mexico

Myabee
Posted by
  • Thanks minouche I think that's my big worry the thought of one off my kids having this , consultants are Holding a meeting today I am sitting worrying my phone is going to ring with more bad news, although I have found that being on here has help me no end.  I'm generally a laugh and jokey person I never really take life to serious my Moto life's to short seems to be backfiring now lol.thanks and well done to you keep well
  1. Myabee
We all have the strength in us to fight we just need to find it .
barbaral
Posted by

I think you might be scaring yourself more than necessary.

All thyroid cancers are technically classified as 'rare' (I assume rear is a typo)

The thyroid is a hormone-driven organ.

So a rare hormone thyroid cancer could be an absolutely normal thyroid cancer because all of them are rare (I think that's defined as <6 per 100 000 people) and all of them are hormonal.

Best wishes

Barbara

“Scars are tattoos with better stories.” – Anonymous

Myabee
Posted by

Thanks Barbaral , it's MTC I have got op tomorrow morning 8th of July. It also in lymph node but he said it looks like lymph node has done its job ,thing is I haven't got a clue about MTC I don't know if it's something I'll have to live with for the rest of my life or if it can be cured,I no I'll need genetic test done severally worried about that as I have four kid's if you have any advice I'd be greatfull, minouche has been a great help also .thanks hope your keeping well

  1. Myabee
We all have the strength in us to fight we just need to find it .
barbaral
Posted by

Hello

I hope the operation went well today.

Finding info about MTC IS more difficult than the other thyroid cancers so it's nothing to be ashamed of that you don't have a clue. But it's worth having a good hunt around the older threads to see what you can find.

Minouche asked me to let you know that she can't respond at the moment as she has issues accessing the site but she will be happy to help once she can get on again.

Best wishes

Barbara

“Scars are tattoos with better stories.” – Anonymous