Thyroid cancer with distant mets at diagnosis: Looking for support

Hi everyone, my husband was diagnosed with papillary TC about 10 days ago and he has a TT next Thursday. Our consultant said yesterday that the chest CT has not been very straight forward. They’ve seen four 3-4mm nodules in the ribs and a tiny unknown deposit on the bone. Cancer has probably metastasised to the lung but he’s not sure about the bone. We had a PSA blood test today to rule out Prostate cancer. Has anyone been in a similar situation? Thanks!

Hi @carolinanurse, sorry to hear about your diagnosis! My husband was diagnosed with papillary TC about 10 days ago, he’s having TT next Thursday. My main worry is the same as yours, four nodules in the ribs and some kind of deposit on spine. The surgeon said all he cares about now is removing the T gland. I’ve been looking up bone mets and am very scared. That said, I think RAI will get those lung nodules sorted.

@roya81, I actually merged your post with this discussion that @carolinanurse started. @jay88 too was diagnosed with metastatic thyroid cancer at the time of first diagnosis.

Seeing mention of lung nodules, liver lesions, bone deposits ignite fear and worry and bracing for the worst. It's rather the double-edged sword of getting reports before one's appointment with the oncologist. It's important also balance the worry and not let it run wild.
"Lung nodules are small clumps of cells in the lungs. They're very common. Most lung nodules are scar tissue from past lung infections. Lung nodules usually don't cause symptoms. They're often found by accident on a chest X-ray or CT scan done for some other reason." https://www.mayoclinic.org/diseases-conditions/lung-cancer/expert-answers/lung-nodules/faq-20058445

Likewise, "Liver lesions are abnormal growths of liver cells that can be cancerous or noncancerous. They’re found in as many as 30 percent of people over the age of 40. The majority of liver lesions are noncancerous, or benign. Many lesions are detected during imaging tests for unrelated health conditions. Although most lesions aren’t harmful, it’s still critical to receive a proper diagnosis." https://www.healthline.com/health/liver-lesions

@roya81, it sounds like more investigating needs to be done to understand the abnormality of the bone. Thyroid hormones play an important role in bone mineral homeostasis and bone density. The bone deposit may or may not be metastasis.

I realize that it is much easier said than done, but try not to use today for tomorrow's worries. In other words, you need more information and until then focus on getting good sleep and to be prepared for your upcoming appointments. I usually find it helpful to keep paper and pen handy. When things start whirling in my mind, I write it down as a question for the oncologist. Writing it down helps me to put the worry in its place and move on to occuppying my mind with other things. I'm not always successful, but sometimes I am.

I'm glad you have found this group to share with each other.

Ah, @colleenyoung, very relieving comment. Everyday has been a rollercoaster of emotions for me, one minute I’m very positive and hopeful, the next minute, I’m sobbing loudly. My husband is very optimistic though. He doesn’t like to see me crying but sometimes I just can't help it.

I’ve now stopped looking up the mets thingy and I’m trying to concentrate on his op and recovery only. I’m sure he’ll be fine.

I tried McMillan chat yesterday but the nurse was super-slow in responding so I gave up. Do you have any suggestions for getting answers to medical questions at all? Our consultant’s secretary is awful, her phone is on voice mail all the time.

@jay88, please could I ask at what stage you are atm? Any advice would be much appreciated.

@colleenyoung, thank you again tor your kind words! xx

Roya, do you have access to an online patient portal with your doctor?

@colleenyoung, do you mean to have access to his notes? I don’t. But, I can request the results to be emailed to me. I’ve left all this to post surgery as don’t really have the capacity to think about anything atm.

A little update: I saw a pulmonologist and he went over the CT scans with me. He said there are dozens of nodules in every lung field bilaterally. I am set up for a bronchoscopy for biopsy after my TT, which will be Tuesday the 20th. He strongly feels they are either a separate primary lung cancer or mets. I have begun coughing up blood as well. I will keep y’all updated. I’m just trying to get through the thyroidectomy for now. Prayers always welcome!

Carolina, that's a lot to take in all at once. My thoughts are with you. I'll be thinking of you as you get ready for the thyroidectomy. I really appreciate your keeping us all updated as you're able.

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!

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!