suspected medullary thyroid cancer

Hello,

I'm afraid I don't know much about medullary thyroid cancer but I just wanted to leave a quick message to let you know I've been thinking of you since I read your post last night. It doesn't sound stupid, I have found that waiting for results is by far the worst part of the whole cancer process - not knowing exactly what you are dealing with. Once you know whether it is or it isn't medullary cancer, you will have a plan and be able to get on with dealing with it. Right now, I'm not surprised you are feeling so terrified. Take care of yourself over these next few days as you wait for the results.

Sorry to hear this @drogo1872 and I can fully understand what you are going through.  I don't have any experience with Medullary Cancer but I know how dreadful it is waiting for test results, but please know that there are lots of nice people in here who you can talk to and will try and help if they can.  It is scary especially when you have a young daughter to consider and I hope your results are good ones, try and stay positive until you get them.

Your life is not over.  MTC is a scary diagnosis, but it is unlikely to have spread beyond the area of your neck, in which case it is highly likely you will be fine.  You will find out in another month or so based on your Calcitonin level if biochemical cure was achieved.  If so, congratulations!  If not, it is not the end of the world.  MTC can be controlled (kept in remission) for years and years.  Biochemical cure is considered to have been achieved when the postoperative Calcitonin level drops to and stays at undetectable or extremely low levels.

The two most important prognostic factors for Medullary Thyroid Cancer treatment success are how early the cancer was caught and the age of the patient.  The third most important factor is gender (females do better than males).  You have at least two of these (the most important two) in your favor, and perhaps the third one as well.

Be aware that your Calcitonin level will take up to several months to diminish to your new baseline, especially if it was a high number before your surgery.  Then your Calcitonin level will be monitored regularly to watch for cancer growth or reoccurrence.

Here's a bit of anecdotal encouragement:  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 think I am going to be okay, and I think you are going to be okay.

Best wishes,

John M