Hi all,
My name is John and I am a Medullary Thyroid Cancer (MTC) Survivor (so far). I was diagnosed several months ago, and had a Thyroidectomy and Radical Neck Dissection November 8th (61 Lymph Nodes, Right Recurrent Laryngeal Nerve, part of the Right Spinal Accessory Nerve and probably some other nerve and vascular material removed).
Things are going fairly well. There was a lot of nerve damage, I'll never sing again due to the sacrificed vocal cord nerve and my speaking voice is now very low and quiet. This is going to present some trouble when I return to work (I am an ICU Nurse and ICU patients tend to be old and hard of hearing). I actually bought a small megaphone to help with those situations, which will look a bit comical, me pointing the thing at a patient laying in bed. The nerve inflammation is quite unpleasant (not exactly numbness, more like the feeling of when a limb falls asleep but is waking up and very sensitive to touch combined with a bad sun burn). I feel this all over the right side of my neck up to the lower part of my face on the right, and it includes my right ear. Also my whole right shoulder and the upper part of my chest has this nerve inflammation as well. Hopefully it will subside with time to some extent. I've read that it often does as the months pass by. I also have some muscle wasting in my Trapezius, Deltoid and Sternocleidomastoid muscles on the right side due to nerve damage during the surgery. Range of motion and strength in my right arm is diminished, but not too bad and I am improving with exercise.
I can still play my trumpet and that is a big deal to me. Before I became a Nurse as a second career, I was a professional trumpet player for more than 30 years (I am now 61). I still give private trumpet lessons over Skype to students all over the world, and during those lessons I play the assigned exercises back and forth with my students, so still being able to play my trumpet is very important to me.
Medically, things are going very good at this time. While my preoperative Calcitonin level was 3,313 pg/mL, I just received the results of my first post-surgical Calcitonin level, and it has dropped to just 94 pg/mL. The half life of Calcitonin is very long so it will take up to several months before the preoperative Calcitonin has completely left my body. We expected a potentially much higher number at this first blood draw (one month after the surgery). Hopefully the Calcitonin level will continue to drop. I've done a LOT of research into MTC, and in all the research I've read, there are no cases of people with preoperative Calcitonin levels of 500 or greater who achieved full *Biochemical Cure of the disease after surgery, so I know that it would be a miracle if I do (truth be told, my goal is to be "one for the record books"). My Carcinoembryonic Antigen (CEA) level was only slightly elevated before surgery (19.7 ng/mL) and is now normal (currently 4.0 ng/mL). Normal range is 0 to 5.0 ng/mL. That is very good news as well.
It is important to know that even without full biochemical cure, one can live with this disease present, perhaps even at the microscopic level, but not getting worse for many, many years (20 or more). And recurrences and exacerbations are often treatable.
Well, that's my story and I am sticking to it. 
Due to the extreme rarity of MTC I see there are few posts here about it here. The one that led me here from a Google search is more than 5 years old, and a little disturbingly, a significant number of the small group of people who took part in that discussion are no longer members here. That is a little scary. Anyway, I would like to be of help to anyone here with MTC, if you have questions about it, I have done a LOT of studying and research during the past several months (many hours a day), and in addition to my education as a Critical Care Nurse I also studied Biochemistry and Biomedical Engineering for a number of years. I wish you all well.
Cheers,
John
* Biochemical cure of Medullary Thyroid Cancer is considered to have happened if the Serum Calcitonin Level drops to extremely low or undetectable range.
Hi John
my hubby is MTC - diagnosed 10 years ago , had 2 surgeries 2012 & 2013 and experienced problems with voice ( he teaches so this was a worry) , partial temporary tongue paralysis, nerve damage in shoulder and subsequent muscle wastage, parathyroid damaged in surgery so now on calcium and vit D as well as thyroxine etc etc
the voice and tongue and nerve pain has greatly improved over time - I would say the shoulder is still weaker but range of movement is good - I remember him having some sessions with a speech therapist which helped enormously
he had to have another op this year as calcitonin was creeping up again , pesky critters … so had lymph nodes removed on the opposite side to original surgery in February
but all things considered he is doing well 10 years on from initial diagnosis!
currently waiting for calcitonin test results to see if latest op has done the job - initial test results after op number 3 said in was almost undetectable so we are 
it has stayed that way !
I think we are resigned to never being completely free of it , close monitoring and surgery to zap it if the C numbers are creeping up, although they got back up to nearly 1000 before they found it in the lymph nodes and decided on op number 3
wishing you a speedy recovery - slow and steady steps in the right direction
C
