Thyroid cancer with distant mets at diagnosis: Looking for support

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!

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

Hello everyone. This is another update. I had my work up at the Clayman Thyroid Center yesterday. Things did not go as we hoped. The ultrasound showed extensive cancer throughout my neck and the lymph node biopsy was positive for thryroid cancer. So I was immediately taken for a total thyroidectomy and neck dissection. The cancer had completely taken over my left laryngeal nerve so it was removed. It was already almost completely paralyzed and my right vocal cord has already been compensating. I am hoping I can sing again someday but that is not happening now. I can talk but am having trouble with some sounds. The cancer was also in the outer layers of my esophagus so I am feeling blessed that wasn’t worse. Dr. Clayman removed a lot of lymph nodes as well and feels he got all of the cancer.

Unfortunately there are dozens of pulmonary nodules and they are concerned because they are on the larger side. I also have a suspicious area on my liver.

They will get pathology back right after Christmas so maybe I will have a prognosis then. They were very clear that this is not typical papillary thyroid cancer and it seems to be pretty aggressive. They also sent my tumor to a place that will analyze the molecular type and match me with clinical trials for targeted chemotherapy, and I guess that will start as soon as possible. I will also have to have external beam radiation on my neck. And in 90 days I will start radioactive iodine. I am very sad, but it’s time to FIGHT!

Hello everyone. This is another update. I had my work up at the Clayman Thyroid Center yesterday. Things did not go as we hoped. The ultrasound showed extensive cancer throughout my neck and the lymph node biopsy was positive for thryroid cancer. So I was immediately taken for a total thyroidectomy and neck dissection. The cancer had completely taken over my left laryngeal nerve so it was removed. It was already almost completely paralyzed and my right vocal cord has already been compensating. I am hoping I can sing again someday but that is not happening now. I can talk but am having trouble with some sounds. The cancer was also in the outer layers of my esophagus so I am feeling blessed that wasn’t worse. Dr. Clayman removed a lot of lymph nodes as well and feels he got all of the cancer.

Unfortunately there are dozens of pulmonary nodules and they are concerned because they are on the larger side. I also have a suspicious area on my liver.

They will get pathology back right after Christmas so maybe I will have a prognosis then. They were very clear that this is not typical papillary thyroid cancer and it seems to be pretty aggressive. They also sent my tumor to a place that will analyze the molecular type and match me with clinical trials for targeted chemotherapy, and I guess that will start as soon as possible. I will also have to have external beam radiation on my neck. And in 90 days I will start radioactive iodine. I am very sad, but it’s time to FIGHT!

hi everyone again, got lots of questions. i am wondering about the statistics of older people surviving this thyroid cancer. like the dr. said, you can't go to the internet for answers because its old material, i agree and my sister who hates computers told me the same thing. the way i look at it, information from back then surely has improved by now. i really prefer looking at present material if it is available. how do i find a good thyroid surgeon. i have been assigned a general surgeon who i have heard was great. like it says on the internet, make sure the surgeon had done more than one thyroidectomy. i wish each and everyone on here the best of outcomes of what they have to have done. i am on that rollercoaster too. it is mind boggling for sure. prayers for all.

Happy New Year everyone!
This is another update. I just got out of the hospital yesterday. I had to have emergency surgery to evacuate a huge hematoma that collected almost a week after my thyroidectomy. I am doing much better now but still have a drain. I had my PET scan while in the hospital. Both of my lungs have metabolically active cancer and in addition my left lung pleura has several malignant lesions. We don’t have pathology back yet, but I did speak to an oncologist who let me know that pleural metastases are a grave event and the cancer will not be curable. If the genetics come back with the RET mutation, there is a clinical trial that may give me a few years. Otherwise I may be looking at a rather short journey. I am feeling blessed to be home tonight with my loving husband. I will fight this with whatever treatment they offer because I have beaten terrible odds before!