Oncocytic Cell Carcinoma with angioinvasion

@ejjb, as I'm sure you've learned, oncocytic carcinoma, previously known as Hürthle cell carcinoma, is a rare type of thyroid cancer originating from oncocytic cells. Angioinvasion means tumor cells have spread into the blood or lymphatic vessels. However, your report says that the cancer is limited to the thyroid and the lymph nodes tested are benign (no cancer).

Have you met with the oncologist in the meantime? What treatment has been recommended for you? How are you doing?

@colleenyoung My tumor ended up being 5.5cm, so my surgeon is removing the other half of my thyroid Nov 21st. Then, after I heal from that, they'll do radioactive iodine therapy. At that point they said they would do a total body scan to see if anything has spread. That's obviously the part that scares me. Just very hard to believe at 42 and pretty healthy that this happened, but I guess literally everyone says that.

Thank you for messaging!
~ Erin

@ejjb

Hi! Wow, crazy how similar our stories are ( I am 43 )

I also have angioinvasion with clear margins. I had a total thyroidectomy in May 2025. Initially they weren’t concerned about lymphnodes. I had my uptake scan on 4th Sept, where it was determined that I do have lymphnodes affected. I was admitted and RAI done 6 Sept.
currently on “wait and see “ mode, as my next scan is only due 10 Dec to see if the RAI was effective.

There is SO much contradicting info on treatment of our conditions, so be hesitant to read up on “Dr Google “ unless it is a reputable institution.

I was fortunate that my surgeon referred me to an oncologist whom he believed had the necessary understanding of this, and the oncologist got the nuclear dept on board.

It’s scary and it’s emotional. For your own sake - ask as many questions as you can. I find that the Dr’s are quite keen to answer and explain, and honestly, it helps.

Take every day as it comes. Stay active, eat healthy and listen to your body AND your soul. This is not just a physical diagnosis.

Chin up - you’ve got this! 🦋

@samjdp
Wow, yeah very similar! This legit helped me feel somehow less alone, thank you!!! My team is already planning on RAI therapy just to "be safe" which I'm honestly relieved they're taking a proactive approach. What was the uptake scan like?

Sending healing thoughts and vibes your way for that Dec 10th scan!!!!

I am so happy that you feel less alone. It’s crazy how this journey makes one feel ridiculously isolated - even with friends or family around.

The uptake scan was a low dose of RAI ( mine was capsule form ) followed by the scan, which was stupidly long, but pretty much the same principle as a CT scan. Other than being tedious, it wasn’t terrible. Not invasive at all.

The RAI therapeutic dose wasn’t great - I found the isolation room horrible. I had some nausea ( but not much ) and terrible headaches. Thereafter it was just a mental thing, as you constantly have to remind yourself not to hug your kids, play with the pets etc.

I was hesitant to have the RAI as I read too many horror scenarios of developing leukemia etc ( hence my saying don’t google - ask the experts! ) 🤣, but truth be told, I am really happy I have had it done, and all in all not nearly as bad as it’s made out to be. Definitely take along tons of sour candies to stimulate your salivary glands, otherwise they become tender and your mouth very dry. I have a new appreciation for sour patch kids! 🤣

🦋🦋🦋

@samjdp
Good to learn about the uptake scan, I had something way more invasive pictured in my mind and was too scared to ask about it or research it.

My team is going to let me isolate at home since my house has a basement and I can completely isolate from my husband and kitties, which sucks, but I'm glad it's not in the hospital for that part since I'll have to isolate for 7 days. Good to know about the dry mouth, I'm already prone to that so I'll stock up for sure on sour candy!!!!!

If you ever need to message me for support, I'm here. Let me know how your Dec 10th scan goes, I'm rooting for a sparkling clean report!

~Erin

@ejjb, please note that your personal contact information was removed from the public forum. To share personal contact information, it is better to use the secure private message function.

I might add however that by sharing here in the forum, you are connecting with several people where all can benefit from group support. 🙂

@ejjb

That’s fantastic! Initially they said I could self -isolate too, but after the lymph nodes issue was detected they upped my dose to 180mci RAI, so legally I wasn’t allowed to anymore.

I also drank a lot of iced coconut water, really helped for the thirst. Also, if you’re prone to dry eyes, keep some lubricating eye drops on hand. Thankfully dry eyes wasn’t something I struggled with.

I truly hope all goes well for you, and you are also welcome to reach out at anytime!

Hugs and best wishes to you ( and your family)

Samantha. 🦋