Anyone else out there with medullary thyroid cancer?

Hi and a very warm welcome to the online community

I don't have the type of cancer that you're asking about but I noticed that you hadn't had any replies to your post yet. By replying to you it will 'bump' your post back to the top of the page where it'll be more easily seen.

I typed 'medullary' into the search bar in this group and found a few older posts which mention this type. If you haven't already done this, you could do the same and reply to any of the more recent posts if you wanted to.

Please don't feel nervous about posting here as I'm sure you'll find everybody in this group friendly and willing to help if they can.

x

Hello

I don't pop by here very often but I do have a useful list of members who have medullary who have previously given me consent to list their names so you can track down their posts.

By naming them, they should get an email alert if they are still signed up and I hope somebody will come over to say hello. We have members who've had medullary for many years and are great at reassuring people.

So it's a big hello to

to Minouche

to

to Wooz

and

If I tell you that my list is in the back of my 2018 diary, you'll understand that it might take a while to find people and some may be inactive on the site by now.

Good luck

Hi Barbara

I'm still around although I don't often pop into this site much anymore. I had a medullary microcarcinona removed in March 2018.Ir was only found to be medullary when biopsied afterwards.Fortunately  there have not been any signs of any more.I had the rest of my thyroid removed a few months later.My last check up was in November last year, following an ultrasound, CEA and Caltitonin test.Everything was normal.

I hope all the others with medullary and all the other members of the group are well.I found this site invaluable and hope others continue to do so.

Hope you are well too.

Hi KAM14

I have just replied to Barbara's post and then saw yours.I haven't been on this site for ages.

Please don't be nervous about posting on here as there are others who have medullary thyroid cancer who will be able to give you great advice and tell you their stories.This was the best site I could find when I was first told that I had it and the replies I got were very useful,helpful and reassuring.

Mine started with me finding a thyroid nodule and 2 FNA biopsies,2 ENTs later, I had a partial thyroidectomy. A medullary microcarcinoma was found and I had the other half removed a few months later. It was very small and my last ultrasound was fine as was my CEA and Caltitonin blood tests.

It sounds as though you have had a challenging time with having had extensive surgery and ongoing treatment.Are you in the UK?I sm in Ireland. 

I hope one of the others also replies to you so that you can have any questions you may have answered.

Hope you stay safe and well

Kind regards

Wooz

I just LOVE it when a call out with some tagged people results in them coming back to help.

Thanks Wooz.

Hi all

Through my VPN, I’ve just managed to get onto the site. Thanks for your help earlier.

Wooz, I’m glad all is going well for you and that you are living life without too many worries. 
I’m in regular touch with Dogrose who is doing ok too. 
As were not seeing many posts from our other MTC friends, I must assume things are going ok.

Wishing all of you continued good results

Hi Kam14

As you can see a few of us are popping up to say Hi. I’m having issues getting onto the site recently and so was not able to respond earlier, but I did ask Dogrose to post to you.

My MTC was discovered following a routine operation to remove a cyst. I live in Mexico, so a visit to a doctor is somewhat a little more different from going to an NHS appointment. My doctor decided that he wanted to see what this lump was. It turned out to be benign, but hiding somewhere in there, they found a 2.4cm growth they decided should not be there and sent to the lab in Mexico City. It took a month before I got the diagnosis, to then be told I had to go and get the rest out including a central neck dissection. Move on 4.5 years and so far all is good. I’m overdue for my calcitonin and CEA, but that’s because of our COVID situation here. I’m sure everything is ok. 

please fill in your profile with your story. That way more of us can respond. You can also send friend request for any of us who are in this group. 

You’re not alone. Take care 

Thanks so much for replying. 

I will definitely have a look at the older posts, thanks for the idea.  

Thanks Barbara, thats a great help. Ita very kind of you. I cam aee that some peole have already git in tiuch. Cheers. 

Thanks fir reolying Wooz!  I have juat looked fonight to find all these lovely pwople who have the same diagnosis... Its so nice to hear frim people who have similar experiences.

I'm in England and  yes I'm having ongoing treatment. My calcitonin and  CEAs are off the scale and always have been so its difficult at the best if times. My recent scan was stable so at least thats good news. I juat find it a bit scary that im just gradually going to get worse but have no ide how long it will take or what it will  entail!

 I  try and get on with my lfe and mke as many memories that i can, while i can.

Sometimes  just ramping up the energy these days can be exhaustung.... Ive quite enjoyed lockdown! !!

Thanks for the message. Best wishes.