New Member Undergoing Treatment Currently with Questions

wepn829

Hello - new member (50 y/o male) to this site, so hello everyone! I was diagnosed with Papillary Thyroid Cancer (Follicular Variant) two months ago. They discovered this because a CT scan uncovered I had a 9.5 cm mass in my chest that was squeezing my trachea down to an opening the size of just 3 pencil tips. Within two days of the CT scan, I was in the hospital and a few days later the mass and my thyroid were removed (the mass had grown from my thyroid). A week later they confirmed the cancer diagnosis. Two months later, I am currently in isolation writing this message after having RAI therapy. Needless to say, this entire experience was fast moving and a little overwhelming!

Question for this group - after my body-scan last week before the RAI therapy, the test indicated that the cancer seems to have spread to about half a dozen lymph nodes in and around my neck and possibly a few nodes in my right lung. Reading up on this, usually they can tell this before the surgery to remove the thyroid, so they often remove the cancerous lymph nodes then as well. In my case, they did not have a cancer diagnosis until after my thyroid was removed, so they did nothing with my lymph nodes. So my question is - any idea how they typically treat this after it has moved to they lymph nodes? Is the expectation that the RAI therapy will also kill these cells, or is another surgery or even beam radiation an option? My doctors are being vague about it, but being in isolation currently, my head is spinning!

Anyone have or know of any similar situation?

Miles' mom

Hello. In my case, many lymph nodes lit up also from the scan (after removal and another surgery, because "this cancer like to pop around").

No one seemed concerned. Evidently if you took a healthy (seemingly) person off the street, lymph would light up too.

I have a team of drs., who have been on this journey with me for awhile. I trust them. But believe me…I have asked every question under the sun (they have patiently answered).

RAI took care of it for me. Of course, every body is different and please bother your drs. Lord knows we have the right to do this.

God bless and stay positive :]

wepn829

https://csn.cancer.org/discussion/comment/1719108#Comment_1719108

Thanks for the reply, I appreciate it. I feel so left in the dark. I had the RIA therapy 2 weeks ago and the body scan a week later, and I have no idea of next steps. I have no doctors appointments for the next 2 months and no one has called to go over the scan. Definitely will be pestering my docs this week!

Miles' mom

PLEASE, please do. We are our own advocates. Like I said, I have been blessed with such a good team (who actually discuss progress and next steps together — Kaiser, if you're wondering). This was essential in my journey. A network of loved ones! Good drs and Jesus at the helm. This is a scary time with the unknown. But with those three things!! These are your super power.

And also this sight. It was my go to!!

hf005

Any news? I think it’s hard to say what next from the RAI scan. I saw an endocrine surgeon who said if it’s big enough to see in an ultrasound then it’s too big for RAI to work, RAI is really good at killing microscopic size thyroid cells, but not things on the order of mm or cm. But I didn’t think they could see that size of the cancer/thyroid cells from the RAI scan, only areas that lit up with the iodine. Maybe I’m wrong though. My best guess is your just going to have to wait until you’ve healed enough for the doctors to do an ultrasound and assess what next. Sorry! The waiting sucks! But hopefully all that lit up was destroyed by the RAI.

Miles' mom

Yes…I have been thinking of you and wondering if you had any news/answers.

Also have always wondered if Drs or nurses ever posted or are they too busy🤨🧐

wepn829

Thanks all for the follow-ups. I don't have much in terms of answers yet. Basically, the suspect another surgery will be needed and/or another round of RAI. We are "waiting" to see how the radiation took, and will have more answers towards the end of January. I don't enjoy not having answers but I am hoping for good news when I get it!

Miles' mom

Waiting is, by far, the hardest. Praying for good news also! Merry Christmas ALL :)