Medullary thyroid cancer

Hi John 

I have been recently diagnosed with MCT and I am having my operation next week. Radical central neck dissection, having all the thyroid removed, and a tumour of 4 cm. I shall be in Hospital between one and two days, and I just wanted to ask what to expect post surgery, I live on my own and wonder if I will be able to cope? 
I would really welcome any advice,

thank you, 

Hi there, 

I was diagnosed with MTC in March after a total thyroidectomy and left neck dissection in the same month. Although I don’t live alone I would have been OK post surgery if I did.

I think it would also depend how fit and mobile you were pre surgery. I was healthy and active so was able to recover well at home quite quickly. It was more the practical things that were an issue like sleeping on one side. I had some minor muscle and nerve damage on my left side but it was manageable being in my own in the house doing day to day things. 

hope this helps 

Chris

Thanks so much …. Sounds reassuring 

To be honest I am still in shock about it all. 

I am quite active but since my diagnosis I have stopped all my normal activity as I feel so tired. 
My calcitonin level is 1900 and my CEA is 19 but I don’t fully understand what that means. My mind went blank when my consultant was talking to me 

I am sorry to hear of your diagnosis. I can totally understand the shock. It’s tough getting the diagnosis but then there is this wave of information you have to get your head around. I would recommend the AMEND website too.. 

It’s good that you got your calcitonin and CEA numbers before surgery. They are important as a baseline figure and will be monitored closely going forward. 

in a nutshell they will keep an eye on those numbers and any upward deviation in the future will be be an indicator that the consultants will need to act on. 

All MTC diagnosis’s should also be offered genetic testing going forward too. But I imagine they will wait for your surgery first. 

Thank you so much 

I forgot to ask about eating meals post surgery, how long were you on soft foods for and were soups okay to have in those first few days post surgery? 

aww yes I will be having the genetic blood test and I’m just praying that it isn’t connected to my family/ siblings 

thanks again 

 Just currently waiting for my genetic test results. This whole thing is bad enough without the added anxiety of dragging my kids into it too. 

I was onto solid foods pretty quickly to be honest. A couple of days of soups and sandwiches is usually all it is. But listen to your body. I really hope it goes well for you. Feel free to contact me anytime you want.