Oncocytic Cell Carcinoma with angioinvasion

@samjdp
I'm on that same mental roller coaster, I totally know what you mean! I literally have the same cycle of really angry and frustrated at the Drs, where I want to go confront them and yell at them how terrible they are at their jobs. Then the next day I'm like "oh well I'm too tired to be mad." It's nice to know these thoughts aren't isolated.

I'll be thinking about you and if I forget to check in before your March appointment, let me know how it goes! I'm rooting for you < 3

@ejjb
I feel for our significant others. My Hubster says if he doesn’t like my mood he waits 10 min, as he knows it will change! 🤣

Will certainly keep you posted - please do the same.
Hugs to you. 🦋

@samjdp
Were you able to get your scan booked? Will you need to do a low-iodine diet for 2 weeks prior to the scan?

@ejjb

Hey Erin!

Hope you have been keeping well.
I did have my scan ( this past Thursday)
I had to have the Thyrogen shot on Monday.

I did have to follow the LID diet ( 🤢)

Not much news really. They have changed my risk stratification from “intermediate “ to “intermediate-high” and have determined that there is metastasis in the lymph nodes.

I need to stay on the LID diet for now, as I am due another scan on the 9th April ( so Thyrogen on the 6th again)
Very frustrating as I have no idea as to why they need another scan. I guess I shall wait and see what my “lucky packet “ holds…🤣

I hope that you are well on the mend and not having prolonged side effects from the RAI.

Take care of yourself ! 🦋🤗

@samjdp
The low iodine diet was the worst!!! Sorry you have to stay on it this long! The lack of communication these Dr's have seems to be a common factor, regardless of the country! You'd think for as smart as they're supposed to be, common sense with communication skills would be a given, guess not.

I've started prepping a list of questions before I go into appointments, and then at the appointment, I ask for an email address where I can ask follow-up questions. Getting the email from them to ask follow-up questions has really made a difference.

Keep me posted about your April 9th scan, hoping for better news!!

@ejjb that’s such a brilliant idea! I also have a list of questions, but honestly, I rarely even get through them. I tend to allow myself to be sidetracked far too easily. I love your advice on the follow up email, and I am absolutely going to be doing that!

This LID is truly horrible - I love good food waaaaaay too much - and it makes it quite hard to maintain my calorie intake with training.
Please keep me posted on how you’re doing too, as well as on follow up appointments. 🦋

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! 🦋

@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.

@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.

@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! 🦋