1. < Thyroid Cancer

Thyroid cancer with distant mets at diagnosis

Posted by carolinanurse @carolinanurse, Dec 9, 2022

Hello,
I am 51 years old and last week I went to the ER for a headache after a car accident. The doctor did CT scans head to pelvis and found a 2.8 cm nodule on my thyroid, a 2.5 cm adjacent lymph node, other cervical lymph node involvement, enlarged mesenteric lymph nodes, multiple bilateral pulmonary nodules (largest is 1.6 x 1.5 cm), and a 7 mm hypodensity on my liver. The radiologist report said this is highly suggestive of a metastatic process. I have surgery set up at the Clayman Thyroid Center in Florida on December 20. The doctor there told me not to worry about the pulmonary nodules or liver spot. She hasn’t even seen my scans. I am a nurse and used to do oncology, both peds and adult, and pulmonary nodules definitely worry me. This seems like it is going to be awful. I have no idea what to expect, what my chances of survival are, or anything. I guess I am just looking for advice and support.

Interested in more discussions like this? Go to the Thyroid Cancer Support Group.

carolinanurse | @carolinanurse | Dec 22, 2022
In reply to @jpuntasecca "I know all of this information is very scary and the treatment ahead of you seems..." + (show)
@jpuntasecca

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!

REPLY
1 reply
jpuntasecca | @jpuntasecca | Dec 23, 2022
In reply to @carolinanurse "Thank you SO much sharing your story! I really needed to hear that! I would love..." + (show)
@carolinanurse

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

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I agree! Keep in touch!

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lilyann | @lilyann | Dec 27, 2022
In reply to @carolinanurse "Hello everyone. This is another update. I had my work up at the Clayman Thyroid Center..." + (show)
@carolinanurse

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!

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carolinanurse. a personal question if i may. did you travel from the carolinas to florida? i have seen some of these dr.'s on the internet, the ones from florida and would love to be able to do that. however, i really do not feel like doing anything. my right side vocal cord is paralyzed. so i also have the papillary cancer. i have only had the ultrasounds and the checking of the vocal cords, one biopsy, the lymph node ultrasound.
my heart goes out to you, you sound strong in your mind, so fight with all your might as i will surely be praying for you.

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lilyann | @lilyann | Dec 27, 2022

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.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 29, 2022
In reply to @carolinanurse "Hello everyone. This is another update. I had my work up at the Clayman Thyroid Center..." + (show)
@carolinanurse

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!

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@carolinanurse, this may not be at the top of your to-do list, but think about asking for a consult with a speech-language pathologist as part of your recovery too. They can help with speech, swallowing and, yes, singing.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 29, 2022
In reply to @lilyann "hi everyone again, got lots of questions. i am wondering about the statistics of older people..." + (show)
@lilyann

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.

Jump to this post

@lilyann, might getting a second opinion at Mayo Clinic be an option for you? If yes, you can submit an appointment request here: http://mayocl.in/1mtmR63

REPLY
carolinanurse | @carolinanurse | Dec 31, 2022

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!

REPLY
1 reply
jpuntasecca | @jpuntasecca | Jan 1, 2023
In reply to @carolinanurse "Happy New Year everyone! This is another update. I just got out of the hospital yesterday...." + (show)
@carolinanurse

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!

Jump to this post

I’m so sorry to hear you’re going through so much! Do you know if the lung malignancies are metastatic thyroid cancer or lung cancer? I’m most familiar with thyroid cancer as that is what I have but I know there are new treatments available for both that were not around only a few years ago especially if you have a mutation. I can’t stress how important it is to get a second opinion even if it only confirms what you’ve already been told. At least then you can be comfortable with the treatment decisions that you’ll be making. I’m very lucky to live in north Jersey so I have quick access to Sloan Kettering. I highly recommend going to a similar cancer center if you’re able as they are best equipped for treating cancer and you’ll have access to the latest in treatments and clinical trials. As I mentioned in an earlier post I had my surgery at another hospital in New York City and when I asked the oncologist there if I had a chance of surviving my cancer his answer was “Well everyone dies sometime.” It was a very cold and uncaring response. My experience at Sloan Kettering has provided me hope. It hasn’t been easy but my response to treatment has been remarkable. You said in your post that you’ve beaten the odds before. Anything is possible!

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