Oncocytic Cell Carcinoma with angioinvasion

@samjdp
Hi Samantha!
Yeah, a 180 dose for RAI is high, AND you did no iodine on the diet! I'd have a hard time accepting them wanting to do RAI again after all that too! Sounds like you did everything you possibly could to help the results (and you should be really proud of yourself for that), so I'd question them on why they want a second round for sure...especially since your TSH # is really good (mine was .98 after RAI and they were happy with that). Were there other numbers on your blood work that were high? Maybe antibodies or thyroglobulin?

I'm frustrated for you! So I can only imagine how frustrated, annoyed, and upset you are at all of this. I wish I had more advice or some magic fix I could send your way to help make this journey easier for you. No other way to put it, this journey can really suck.

Sounds like you've got a little waiting period from now until June, get some well-deserved self-care in during that time if you can (a massage, facial, pedicure, etc). And if you need a good rant I'm here to listen!

Hi, I’m Ann,
I just received ed my diagnosis this week. I had a partial thyroidectomy to remove a 2.6cm nodule and the lobe it was atttached to. It came back as encapsulated angioinvasive oncocytic carcinoma, so I’m having the other lobe removed Monday. He said the lymph nodes “looked” good but how do they know for sure? Is it through a scan? My doctor has me scheduled to see a doctor for RAI on June 19th. After reading these posts I am feeling that I need some question suggestions for me to ask my doctor. I think I’m still in the initial shock phase, am a bit overwhelmed and I don’t even know what I should be asking him. Also, what are some good guidelines for an LID so that I hopefully won’t have to do it twice since it seems that this cancer doesn’t respond to RAI very well. Please help, if you will give me some things to ask my doctor so I can be well informed. Thanks and God bless

@anniefannie22
Typically they remove some lymph nodes for testing when they do the thyroidectomy. Your Dr saying "looked good" could mean they looked healthy prior to sending them off to get tested, or maybe he's referring to the lymph nodes that were left after the surgery? Add this to your list of questions to ask at your next appointment.

Absolutely write your questions down as you think of them and take the written list with you when you talk to the Dr. Something I also did that was reallllly helpful is to ask for an email address for either the nurse coordinator assigned to you or your Dr. so you can ask follow-up questions via email, because trying to get them on the phone is a joke. And you will think of more questions, especially as unplanned things happen.

From my experience, the Dr.s will tell you a low iodine diet is fine, no point in going no iodine diet, the extra restriction doesn't matter, but to my knowledge, they have no studies that actually say that (at least my Dr couldn't provide one), this is just the Dr's judgment. I went NO iodine diet. The diet is only for 2 weeks, and I wanted to give my body the best chance of using the RAI effectively. And after treatment and my final uptake scan, my Dr.s were kinda surprised how well the RAI had done.

Something specific to know about RAI that my Drs didn't tell me when I asked what to expect. Depending on your dose, on day 2-3 after taking it, you may wake up with a swollen face and painful jaw/neck. That's because your salvary glads picked up a lot of the RAI and are inflammed as a result. I'd ask them what are the chances that will happen to you and what to do when it happens (sour candy, hydrate, moist heat on jaw/neck, gentle massage).

@ejjb thank you so much for the information. My surgery is in the morning and I have written several questions down. I already have the email of his nurse but I did not even think to send her an email with questions. Thanks again

@anniefannie22 I hope everything goes super smooth with the surgery. <3

@ejjb the surgery went well. Thank you.
And thank you for sharing your story to help others and myself to know what we need to expect and what questions to ask. You are a God send!

@anniefannie22 So glad the surgery went well! Make sure to take it easy and do some self-care for yourself while you heal.

@anniefannie22, how is recovery going?

@colleenyoung
It is going well, thank you!! A little over 2 weeks out from my second surgery. Working on getting the Levothyroxine dosage amount correct. Have been having symptoms of too large a dose; extremely high heart rate, nervousness, shaky feeling and trouble sleeping. My Dr lowered the dose a couple of days ago so I’m patiently waiting for the symptoms to subside. Otherwise I’m feeling good!

Also, waiting to see the endocrinologist to see if I will have to do RAI or not. But I don’t see him for a couple of weeks.

Thanks for this site! Have a blessed day!

Hello, I'm new here. Just received my confirmation of oncocytic cell carcinoma angioinvasive last Friday. My nodules were an incidental finding after imaging for my cervical spine. back in November. The cervial spine was fused first. Then I had FNA of the nodes (three on left and one on right side of my thyroid). One in my left lobe came back positive so my left thyroid was removed May 15th. After my surgery I learned that my surgeon had not removed any lymph nodes because I did not have a cancer diagnosis yet. I am waiting to hear back from my endocrinologist regarding next steps. My surgeons recommendation is to leave the right in there and do repeat imaging in December. But does want me to consult with endocrinology for recommendations and he stressed getting an endocrinologist that specializes in thyroid cancers. I am waiting to hear from the endocrinologist I have seen for their recommendations. Has anyone not had lymph nodes removed? And if so what happened after your positive diagnosis.