Medullary thyroid cancer

Sorry no, but just wanted to say hello and I have only just recently joined the group myself.  

Hello no sorry I have no experience of this but wanted to say hi and hope all goes well with your treatment. 

Hi - I am from the kidney cancer group but I was touched by your post, entered "medullary thyroid cancer" into the search box and discovered member @kam14  was similarly affected and previously asked the same question, these people  Wooz have responded here ->   community.macmillan.org.uk/.../anyone-else-out-there-with-medullary-thyroid-cancer 

Hi Hem96

I am so sorry to hear what you have been going through the last few years.It must've been very tough for you.

MTC is rare and trying to get information about it can be a challenge but when I was diagnosed about 4 years ago,I found this site invaluable. They were a few people with MTC who reached out to me and were very supportive,informative and kind and really helped me as the treatment is different to other thyroid cancers Their names are Minouche, Jadey89, Dogrose and Former Member.I went through my previous posts to find their names so hope they see your message and can respond to it too.

I had  a partial thyroidectomy after I found a lump and once an FNA biopsy classified it as thy3.After the surgery there was a long wait for the pathology and I found out that they had found an MTC microcarcinoma in a different spot to where the lump was. I had genetic testing and had to wait for months for the result as I live in Ireland and it had to be sent to the UK.Fortunately it ended up being sporadic as if it had been familial,my teenage daughter would've had to have her thyroid removed as a precautionary measure.

I went for a second opinion and opted to have the other half of my thyroid removed 6 months later.The pathology was clear with that one.Since then I have my CEA and Calcitonin levels checked and go for an ultrasound once a year.

My understanding of the treatment of MTC is that it is different to that of papillary or follicular thyroid cancer.RAI isn't used and CEA and Calcitonin blood tests are very important and that surgery plays a big part in the treatment.So I don't think I'm really shedding any new light on the subject for you.  But I just wanted to reach out to you in what must be a very difficult time for you.I do hope that one of the others I mentioned before  responds to you too.

Best wishes

Lauren

Hi 
I just saw this thread and thought I’d respond, just for you to know we are a few out there. You can look up my history to get the fuller picture.

it’s very important to have the genetic test done. You are hound and maybe married or in a relationship, maybe have children. As previously mentioned, if it’s sporadic, it stays with you. But if it’s familial, then your descendants need to be tested, and maybe further back, to parents and siblings. 

It’s easy to miss MTC, as there are very few symptoms until it reaches a later stage. The blood tests are very important. calcitonin and CEA.

I have been well since my surgery 6 years ago.

Wishing you a smooth journey

Allthe best

Lis 

HI there,

I just recently joined this forum as I am a recently diagnosed MTC patient.  I am so sorry you had to have a second surgery for the recurrence!  Being in the midst of recovering from my Thyroidectomy / Radical Neck Dissection surgery, the thought of going through a second surgery is not a happy one.

Here's a bit of anecdotal encouragement for both of us: One of my daughter's best friends Michelle was diagnosed with Medullary Thyroid Cancer when she was about 10 years old. She had the surgery and I believe she also had radiation treatments after the surgery. The fact that she also had Radiation Treatments means the cancer must have spread beyond her Thyroid. Both she and my daughter are now in their mid thirties and Michelle has been cancer free all these years.

My preoperative Calcitonin level was 3,313 pg/mL (yikes!). My preoperative Carcinoembryonic Antigen (CEA) level was 19.7 ng/mL (high but not terribly high). My surgery was this past November 8th. My thyroid and 61 lymph nodes were removed. 34 of them tested positive for metastatic medullary carcinoma. And my thyroid's tumor measured 3.8 cm in its greatest dimension. I just received the results of my first postoperative Calcitonin level and it is down to 94.3 pg/mL - very encouraging! And my current CEA level of just 4 ng/mL is within the normal range of 0 to 5.0 ng/mL.

One thing in my favor that I found very encouraging: I was able to have a Skull to Mid Thigh PET/CT scan done before surgery and it showed no cancer activity outside of my central compartment (neck and upper chest lymph nodes area). Basically, I think my Lymph Nodes did their job. They filtered and held onto the cancer cells and didn't let them spread beyond my central (neck) compartment. Poor things! They sacrificed themselves for me.

I hope you've recovered well from your surgery and I hope you are getting good blood test results.

Best wishes,

John M
P.S.  Note that I copied and pasted much of the above from another reply I made earlier this evening to someone else in another similar topic discussion.

Hi

i have just read this post and really felt compelled to reply as I can relate to a lot of what you have said. Although I am much earlier into my journey and confused by it all. I too was diagnosed with thyroid cancer (Dec 22) which was thought to be papillary. However, after a total thyroidectomy a neck dissection I was advised it was MTC. It had also spread aggressively into lymph nodes in my neck which confused the specialists. 

how are you finding it now further down the line? I am still really worried about an upcoming PET CT scan in case it shows something further (another lump has popped up in my groin). But even it it is clear the thought of it being hereditary scares me and living life “scan to scan” doesn’t fill me with joy. 

I think I’m just looking for for someone’s experience in this as there aren’t too many of us to turn to.

Hi Hem96

I have papillary not medullary but just wanted to say i to have had the bilateral neck dissection including central and its tough. Hope you're doing ok and your arms/shoulders arent affected too much.

Take care.

Aby 

Hi Hem96 - this may be quite a late reply.  I have a similar story like you.  I am 54 years old but last year I was initially diagnosed with papillary thyroid cancer after the FNA biopsy.  One of my thyroid had swollen to about 5 inches but I did not have issues with breathing or eating which are the normal symtoms.  I had the full thyroid removal.  Once they took the thyroid to the lab they said you actually have Medulary Thyroid Cancer not Papillary so I was misdiagnosed.  I have been having my blood tests and CEA measured regularly, my calcitonin is between 200 and 300 when it should be under 10 and CEA is 18.  I have also been having regular US scans (every few months) and MRI scan of head and neck and liver.  So far consultants cannot find anything visible in the scans.  So the calcitonin is saying the cancer is still there but the scans they cannot find anything.  My surgeon said I could elect to do central and lateral node removal operation but it is risky as I could damage parathyroid and there are other risks in the neck area.  He has left it for me to decide.  My dilemma is what I should do, I could do the surgery but did not want to have a 3rd surgery if they find that the cancer is somewhere else. 

Hi, I was diagnosed with medullary thyroid cancer (MTC as it is a bit of a mouthful) 3 years ago after being told for many years that the lump in my neck was just a goitre. My calcitonin levels were over 17000 and unknowingly caused stomach issues which meant I was restricted by what I could eat. I had 1st operation in September 2020 to remove right thyroid then 2nd op beginning of December 2020 to remove lhs and some of lymph nodes. Luckily only one lymph node found to have cancerous cells and my calcitonin levels went down to 168 and my stomach problems disappeared. I had initial scans as a 'blueprint' of my body and have calcitonin checks regularly which have been under 220 until last one, which has doubled. I find this worrying but my oncologist is brilliant, very reassuring and quick to run any tests. Being on thyroxine is fine, although I do get tired quickly. 

I have also never come across anyone else with MTC but as my Dr says it is rare they don't test for calcitonin, so maybe that is why it is not always picked up?

Agreed it would be good to discuss with others, I was 55 when diagnosed but had had the lump on my neck fior approx 10 years before that