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Oncocytic Cell Carcinoma with angioinvasion
Thyroid Cancer | Last Active: 4 days ago | Replies (44)Comment receiving replies
Hi Everyone!
I hope there is someone that could PLEASE share some insight on the following…
I am 6 months post RAI ablation for Angioinvasive Oncocytic Carcinoma ( with positive lymph node metastases) and almost 10 months post total thyroidectomy.
I had another scan today and ( again!) it’s been sent for review. I can’t say I am unhappy about that, however, the current thought process is to redo the RAI “bomb” as I call it.
Could someone please explain to me what the thought process behind this could be? Is there any benefit at all to redoing the RAI or am I just putting myself at risk to develop other issues?
Also - Is there any benefit to looking into something like cryoablation or is that only for patients who are inoperable for a thyroidectomy?
Any insight would be most welcome and appreciated, as currently I feel as lost as a chameleon in a skittles factory! 🤦🏻♀️
Take care of yourselves! 🦋
Replies to "Hi Everyone! I hope there is someone that could PLEASE share some insight on the following…..."
@samjdp
Also, I'm so sorry you're going through this!!! After one round of RAI, it feels like healing from that should be the end part of this journey, so I know how frustrating this must be for you.
I'm thinking of you.
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@samjdp
Here's this article on cryoablation: https://www.sciencedirect.com/science/article/pii/S1930043325003644 - looks like it's promising for local recurrence, but only used when cancer has "recurred". It's my understanding that RAI is more preventative--to kill possible leftover thyroid cells that could maybe become cancer later, but since they aren't cancer yet, I'm not sure if cryoablation would work here, but I would absolutely ask your care team!
Our type of thyroid cancer is very resistant to RAI (hope they told you that, if not shame on them for not informing you), and RAI sometimes has to be repeated if the cells didn't uptake the radiation very well.
This is just my guess, but I'm betting your second scan looked similar to your first, and that the RAI first round wasn't super effective, so they're wanting to repeat it. I'd specifically ask them why they want to repeat the RAI and what makes them believe a second round would be more effective than the first was.
After they told me that RAI wasn't super effective against Hurthe cell carcinoma, I did my own research and decided to go NO iodine diet vs low iodine diet in preps for RAI. Because I wanted to really really starve those cells so they'd be more likely to uptake the RAI. I told my team I was planning on doing this and they said "there's no evidence that will make any difference so don't bother", regardless, I did it anyway and after scans showed my 155 dose of RAI killed everything. I may have just gotten lucky that my cells uptook the RAI, but I really think going NO iodine made a difference.
If you decide to do RAI again I'd ask them if a NO iodine diet would be a wise choice. And before you make your decision, I'd also ask them "if I say no to another round of RAI at this time, what additional monitoring tests (extra ultrasounds, blood work more frequent, etc) can we put into place to be more aggressive/proactive with watching for recurrence?
If you end up going the no iodine diet route before another round of RAI let me know, I can help you with what guidelines I followed.