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Oncocytic Cell Carcinoma with angioinvasion
Thyroid Cancer | Last Active: 3 days ago | Replies (44)Comment receiving replies
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
Replies to "Hi, I’m Ann, I just received ed my diagnosis this week. I had a partial thyroidectomy..."
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@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).