Hello ... another Medullary Thyroid Cancer patient here!

Hi JMer and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

Whilst I haven't had the same type of cancer as you I do agree that the waiting for scans and tests can be very hard.

I don't know if you've seen that you've had a reply from one of the nurses but, if you haven't, clicking here will take you to it.

x

Thank you :-)

Hi JMer 

Although I’m not in the exact same situation as you I felt the need to reply. I was diagnosed with MTC last month after my initial thyroid cancer diagnosis before Xmas. It was initially thought to be papillary right up until my operation in March so thought I would go through RAI. 

But with the MTC diagnosis all this changed. It had uncharacteristically spread quite aggressively through my lymph glands and the surgery was extensive and I have also found another lump in my groin. 

All this means I now have a full body PET CT scan this week so try and see if it has spread anywhere else. I totally agree that the waiting has been awful. Can I ask if you had the genetic test and if so how long that took from your diagnosis? I think the MTC diagnosis can be tricky for the consultants/oncologists as is so rare. But I was advised to just keep in contact with them and chase up when you feel you can.  

I hope you get your scan dates through soon and you get on the road to finding answers. 

Hello Hatter, thank you for contacting me and telling me your situation.

I'm sorry to hear about your situation - good luck with your PET scan. When I had mine I was hoping to hear they'd found it and I could get on with treatment. That sounds odd to some of my friends - that I want to know where it is rather than know that it's so small they can't find it yet.

I really hope that it's "just" in your lymph nodes, fingers crossed.

Yes, I had the genetic test and I think I had to wait about 4-6 weeks for the results. That was in 2017 so it's hard for me to remember exactly. I regret not keeping a diary!

I am covered by BUPA with work and so have contacted them for the first time - I can see one of the consultants who treated me in 2017/2018. I don't know if they will put me forward for any tests or scans before the NHS do the next round ... it's good to have an appointment to look forward to. At least I feel as if someone is keeping an eye on me.

If you want, let me know how you get on with your PET scan. I got my results within a week.

Jacquie

Thanks for that JMer 

I think one of the things I’ve struggled with is having contact with someone with a similar diagnosis. I know what you mean, it’s certainly good to think someone is keeping an eye on you. It has to be a positive that you’ll be seen by the same consultant you saw originally. 

I will let you know any outcome. Hopefully there is nothing further tat needs treatment for now and my op is enough. I hope for a similar outcome for you. 

thanks

Chris

I have just pinged a request to one of our long-standing MTC members and asked her to come and give you a virtual hug.

That sounds lovely, thank you x

Just joined here - I have MTC too. Finally diagnosed early last autumn after a lot of medical discusson as to whther it was something even rarer, had the left half of thyroid removed and lymph noes on that side too in October.  Now I am on Cabozantinib (it had spread to lungs and liver) and just about to start levothyroxine. I go to see the oncologist monthly, which I assume is normal.  My calcitonin levels were 13 thousand before they operated I am told - but they are dropping now.

As a newbie to all this, does this sound familiar to anyone?  Will the calcitonin level out at some stage, and what would be aceptale - I do not exect to ever get to normal levels, whatever they are.

Hi JMer and gardentree, wish you the best with your treatment.

I have just joined here and also have MTC.  I was initially misdiagnosed with Papillary TC when they did FNA biopsy.  After full thyroid removal was done (no lymph node removal as they assumed papillary) they found out that I have MTC.  I have been regular blood test and my calcitonin ranges from 200 to 300 when it should be under 10.  My CEA is around 18 last month but was 48 last year (normal level is 3.4).  I have been doing US and MRI of head and neck with my company private insurance.  So far they cannot spot anything.  My company insurance will run out at the end of June as I have to leave this job.  My surgeon does not want me to do PET scan due to the radiation impact of this scan.  My surgeon thinks it is best to leave it as it is until a scan can reveal where the cancer is, he said I could elect to have the lymph nodes removed in my neck but he thinks it is a bit risky at this stage.

I find that in UK the results take absolute ages.  For example I did my blood test at Royal Marsden and they said it takes 4 weeks to get the results! shocking.  I recently visited south africa and visited a doctor there, I got my blood results next day.  Even with private insurance and using a top london hospital to do tests, they constantly forget to measure my calcitonin, which is my main cancer marker..It is generally very frustrating how slow things are in UK even in the private sector.  I will have to transfer to NHS next month as my job is coming to an end this month.  I may consider going abroad to do some tests if that is affordable and I think are reliable..

Hi gardentree,
It sounds like you're further down the line than I am. Good luck with your treatment.

My calcitonin levels are still under 100. I spoke to a consultant privately (through BUPA with work) and they were very reassuring about how slow growing MTC is and that regular (6-monthly) neck ultrasounds, with occasional PET scans, should find it at a very early stage. She also said that they perform more scans when the calcitonin levels double between blood tests.