← Return to Thyroid cancer with distant mets at diagnosis: Looking for support

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I know all of this information is very scary and the treatment ahead of you seems very daunting. I just want to tell you…Don’t give up hope! I had a complete thyroidectomy and neck dissection in February. We went into the surgery thinking I had papillary thyroid cancer but unfortunately the cancer spread was much worse than originally thought and the biopsy revealed that it was the very aggressive anaplastic type. I also came out of surgery with a tracheostomy as the cancer had infiltrated my trachea. I was also told that the margins were not clear so some cancer had remained. As soon as I was released from the hospital I had an appointment at Sloan Kettering. One of the doctors there told me not to go on the internet as the info on there is old. It was too late. I had already researched and found that the prognosis is very poor. I was prescribed chemotherapy and 36 rounds of radiation. The treatment was very grueling and the side effects were even worse after I finished my treatment. It was all very worth it however! My scan showed the cancer was gone except for one lymph node! Because of its location it was too dangerous to remove. I also had bilateral lung nodes that were too small to biopsy. In September I began the targeted combined therapy of dabrafenib and trametinib as my tumor had the Braf mutation. My ct scan in November showed the lymph node is half the size it was and is within the normal size for a lymph node and the lung nodules are nearly resolved! I tell you this because I believe there is always hope! I feel like I’m going to be around for a good while which is saying something considering the original prognosis! My advice is to go to a good cancer center and find a doctor that has experience with your type of cancer. Most importantly try to remain positive and stay hopeful! Keep fighting!

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Thank you SO much sharing your story! I really needed to hear that! I would love to keep in touch with you!