Hi everyone, Just wanting to shre my experience, so far, with MTC. Maybe somebody out there has had similar experiences. 2010 - first had pain and swelling in neck and down left arm. GP said it was a pulled muscle. After 4 more months of discomfort went to another GP. after noticing my trachea was pushed to the right she digged with her fingers under my collarbone and found a large nodule. Ultrasound found large nodule off the bottom of the left lobe,(FNB inconclusive). Surgery, April 2011 total thyroidectomy (after insisting) what the surgeon thought would be a simple operation turned into, in his words "extremely difficult" 4 hour surgery.
Diagnosed Medullary Thyroid Cancer, cancer had grown between the esophagus and trachea, wrapped around the carotid artery with a "web" invading towards the cervical spine. No dissection done - too dangerous, 10% of tumour left behind. Surgeon referred me to have EBR, then called me back and referred me to a clinical trial. Upon seeing the endocrinologist for the clinical trial he believed his associate could do further surgery to remove the tumour load. Aug 2011 - Surgical team of 3 did mammoth surgery, Left & Central neck dissection with Sternotomy for mediastinal mets removal. Right neck untouched.Cut the laryngeal nerve had graft done,voice now is better but weak at times, esophagus had to be repaired but the tumour was only shaved off the trachea,left with numbness of left side of face and neck and weakness of left arm.PET/MRI scans all along have shown uptake in porta caval nodes on the back of the liver and multiple nodules in lungs but due to sarcoidosis history surgeons do not want to do biopsies despite increased uptake on scans. Lymph nodes removed from mediastinum were a mix of dormant sarcoid and MTC mets.
Now Drs do not want to offer any further treatment even though calcitonin has quadrupled since Aug surgery, no surgery, no radiation, will not even give a prognosis. Now exploring Drs overseas, I am in Australia - any recommendations? Apologies for the long story - but this is the edited version;)