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Oncocytic Cell Carcinoma with angioinvasion

Posted by ejjb @ejjb, Oct 9, 2025

Minimally invasive oncocytic carcinoma, with angioinvasion

Anyone else have a similar diagnosis? I got the pathology report, but my surgeon still hasn't called (5 business days later) with what that means for next steps.

The diagnosis does mention (so hopefully that's good news):
LIMITED TO THYROID, MARGINS NEGATIVE
7 BENIGN LYMPH NODES PRESENT

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ejjb | @ejjb | Apr 13 7:22pm
In reply to @samjdp "@ejjb Hi Erin! I trust you are healing well and not having any issues post RAI?..." + (show)
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@ejjb

Hi Erin!

I trust you are healing well and not having any issues post RAI?

Yeah, they did tell me it is rather resistant, but I had the 180 dose in the hope it would kill off the cancer as well as ablate the remnant thyroid tissue post thyroidectomy.

The two scans I’ve just had did show uptake, so I guess thats at least a positive. To be honest, I probably also had a NO iodine diet, as I pretty much had only fruit and veg. NO eggs, dairy, bread/pasta, meat/fish etc.
BUT - any other advice you may have would be most welcome and so appreciated! 🤗

Wrt the cryoablation, I am absolutely grasping at straws. Was kinda hoping that there was a “Plan B” for this rubbish we are dealing with. 🤣 I am quite opposed to the idea of having another high dose of RAI considering it didn’t do much other than ablate the remnant thyroid tissue ( which was obviously necessary ) and with all the literature I have read, it seems that the cumulative doses do pose other risks.

I’ll be chatting to them next week again to finalize the next step, but currently I am due the next high dose on the 10th June with bloods on the 27th May again. In the interim period, I will just be continuing my Levothyroxine. ( 125 mcg - last TSH was 0.56, so almost where they’re aiming for! ) They are also going to consult with the Oncologist for better pain management, as the Tramahexal they’ve prescribed hasn’t been of much help ( and I can’t stand the way it makes me feel! )

Anyway - enough of my tangent! 🤣
Thank you so very very much for your kindness and “remote friendship “

Take care of yourself! 🦋

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@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!

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