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PTC with TCV_Options?

Williamryan
Posts: 27
Joined: Dec 2012

I had my thyroid removed in 2008 with RI 131 followup treatment.  24 lymph nodes were removed from my neck and 12 were positive for papillary cancer, although they did not biopsy for TCV.  For the next 4 years, my annual body scan was negative and TGA were below normal, although in March 2012, my body scan was again negative but my thyrogobulin antibodies were very high at 67.  Had a PET scan and revealed four "hot" spots (2 in neck_1 on vocal cord nerve and 1 resting on my trachea, and 2 in chest_1 below my para-trachea and 1 nestled between my trachea and right lung).  Then had CT scan with resonation to identify sizes, then had fine needle biopsy done on them and results showed TCV and bRAF mutation.  I learned that papillary thyroid cancer with TCV is resistant to the typical RI 131 treatment as well as chemotherapy.  Because of the unique location of the cancer, radiation is not warranted.  My ENT and Endocronologist conferred with John Hopkins and MD Anderson and their recommendations were not to do anything at this time, just monitor the growth through bi-annual PET and CT scans.  John Hopkins stated that Memorial Sloan-Kettering Cancer Center in NYC is conducting research and clinical trials with TCV.  Upon my initial consultation with Dr. Alan Ho (MSKCC) I did not qualify for the clinical trial because my TCV had not progressed enough.  Since then, quarterly blood work was done to monitor the thyrogobulin antibodies, as this can be an indicator for increased activity.  My TGA jumped to 155 this past December.  My PET scan for December 2012 revealed growth, but no spreading.  Although my followup CT scan revealed significant growth, neck (vocal cord-from  3/8" x 1/4" to  3/4" x 1/2" and trachea-from 3/8" x 3/8" to  3/4" x 5/8"; paratrachea - 1 5/8" x 7/8" to 2 1/4" x 1 3/8" and trachea/lung 5/8" x 5/8" to 1 3/8" x 1 1/18") as compared to the CT scan done in April 2012.  In May 2012, I have consulted with a thoracic oncologist surgeon and stated that the cancerous lymph nodes in my chest are too small for surgery at that time, stating that the surgery is quite invasive. 

My ENT stated that she is able to remove the lymph nodes in the neck with 95% certainty that she may be able to avoid any damage to the right vocal cord, but there's always the possibility of vocal cord paralysis.  She also stated that there is a concern regarding scare tissue.  She couldn't elaborate on the latter issue and need info regarding the implications of scare tissue in the neck.  Initially my ENT felt that surgery on my neck is not warranted since one of the two lymph nodes has attached itself to the scare tissue on my left vocal cord nerve and there may be serious damage as well as increased scare tissue.  Although since my most recent PET and CT scans showing significant growth, my ENT is considering surgery. 

I do have a follow up appointment with Dr. Alan Ho in January for further consultation and recommendations.  Not sure if I will qualify for the clinical trial, but more importantly I need more guidance.  He did initially recommend Sorafenib but after consulting with an oncologist, he stated that the side effects out-weigh the minimally positive results already garnered with other patients.  The feedback I receive will determine if I pursue neck and thoracic surgery.  I will be meeting with my thoracic surgeon in February, since the two cancerous lymph nodes in my chest (one at the bottom of my para-trachea and the other is nestled between my right lung and trachea).  

The cancerous lymph nodes have not penetrated to my trachea, other lymph nodes or metastisized to my lungs.  I feel very uncomfortable just "monitoring" the situation with PET/CT scans, afraid that it will spread. 

I am wondering if anyone out there has had surgery to remove the cancerous lymph nodes and if so, what was your experience and reoccurence of the PTC with TCV, as well as any other insightful information anyone can provide.   Please help!  Thanks, williamryan

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