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Aggressive Papillary Thyroid Cancer
After my thyroidectomy for papillary cancer, the diagnosis turned out to be PT3A, which means the tumor is larger that 4 cm with no growth outside being totally contained in the thyroid itself. The tumor is considered aggressive with the BRAF V600E variant. Also there is significant angioinvasion, all strongly suggesting metastasis and the immanent need for a treatment such as RAI. On the plus side there is no lymph node or neck nodule involvement. At this point I am kind of tired hearing "if you have to have cancer this is the one to get!" Ridiculous! this is certainly serious as is the treatment! Please share your advice/experience as to what you would do or what you have done and how it worked out. At this juncture, my endocrinologist (the only one available) has not provided the initial guidance needed so I am trying to learn as much as I can.
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My 36yr old daughter is going through the same thing. She’s also on dialysis due to a rare syndrome called Nail-Patella Syndrome. I wish you the best of luck a good health 🙏
I had not heard the term angioinvasion so I looked it up. I think I am beginning to understand how complex your diagnosis. I see how frustrating it must be to have people assume that it is not a big deal. Many people get scared when a friend gets an alarming diagnosis and want to minimize it because that way they can reassure themselves that nothing bad could come out of the blue for them. But that can leave you feeling very alone with the anxiety about what you are facing. I think you are doing a very good job of researching and trying to understand what you're going through, and I am sorry that you are not receiving more support for how difficult this time in your life is and how scary it is to think about what you may be facing from here. I certainly wish that I could tell you that everything is going to be okay but false reassurances aren't helpful to most of us. You are on a journey through something very unknown right now and this is certainly not how you expected your life to be going. But in all of the information you are seeking and questions you are asking and reading you are doing you are trying to come to terms with this new reality. You may not feel like it but you are moving forward and you are moving forward with much more knowledge than you had a few weeks ago. I wish you didn't have to, and so do you, I'm sure. Getting older is hard enough without having to add something like this on. Keep us posted on the new information as you get it and on what the next step is going to be so that we can continue to support you. Sending hugs!
deborah1031, Thank you for your interest and understanding. The size of the tumor indicates it has been growing for some time and the BRAF E600V mutation means it is very aggressive. The "significant" angio-invasion is the result of the age and aggressiveness of the tumor, giving it time and causing it to grow on, and most likely compromise the blood vessel, thus spreading thyroid and cancerous tumor cells throughout the body. On the plus side, no surrounding tissue, nodules or lymph nodes have been involved according to the surgeon and pathology report. BUT, realistically it probably has spread. I am just glad they found the tumor before it had grown outside the thyroid and glommed onto the muscles, larynx, etc. which it would have because of its aggressive nature. I had a blood draw a week ago and I am waiting the thyroglobulin results indicating if spread and how much (unfortunately it had to be sent to Mayo Clinic-so it takes time). Part of RAI will be a MET scan that determines (as accurately as possible) if, and how much the cancer has spread and where, thus indicating the dose of the radiation. So not until then will I find out the extent of what is going on. At least it has all been initiated and is in the works, so I will just have to wait. At this point, I realize my situation could have been much worse. Many with papillary thyroid cancer have had the tumors spread to many organs, thus needing further or more extensive surgeries. Some have a "tall cell cancer" which is awful, others have Hashimoto and on and on. So all things considered, I'm probably dealing with some of the "best of the bad apples"!
Hi. Did you have a PET Scan and CT scan. Post operation? I think they wait a bit for inflammation to subside. The scans will be helpful.
My thyroidectomy was Oct 21 and the scans were done in January.
Then I had 35 radiation and 6 chemotherapy.
Take care.
No scans or any other tests other than the blood draw and its tests after the surgery. I'm sure (but will certainly ask) that after the RAI their protocol will include whatever scans, tests, etc necessary to inform me of the exact specifics of my condition at that point (I imagine, anyway!). Of course, I'm in the dark after the RAI which seems SOP around here (some of the phone people seem pretty dim-witted or non empathetic (to be kind)) Anyway that's what I have to work with so I'll just make the best of it and ask a lot of questions! Sounds as if you did not have an easy time of your particular thyroid cancer with your many radiations and chemos. I hope all is well as can be expected and certainly wish you the best.
I think at least a PET Scan would put your mind at ease.
Take care