Oncocytic Cell Carcinoma with angioinvasion

@ejjb
Yup - that was pretty much my reaction - well go find some then! 🤣
It was and still is super frustrating, as my lymph nodes in my neck have not subsided at all, and I really just want to know where to from here… but, all in its own time I guess.

I am so sorry to hear that you experienced the side effects like you did… I truly hoped that it wouldn’t be too hard for you. I only had minimal taste loss and also only for a few days. Blows my mind how differently we all experience similar treatments.

How are you coping mentally now? Are you more settled after having the surgeries and treatment?

I am on a roller coaster - some days I am terribly angry and frustrated and other days I have a bit of a “ so what “ attitude…🤣

Please let me know how you are doing and PLEASE keep me updated when you do go for follow up appointments.

Be safe and take care…hugs…🦋

@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

Hey! Good to hear from you.
Still no scan. I’m due for full blood works again on the 01/03, then seeing the Dr on the 11/03 to book the scan. Very frustrating. The hospital didn’t have the iodine capsules for the scan 😡

How have you been keeping and where are you at with treatments now?

Huge 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!!