Recurrence invading internal jugular vein (IJV)

@lipp32, I can imagine that you are very scared for your grandfather and at your wit's end. This all sounds so scary, especially hearing terms like "invading internal jugular vein (IJV)" and "rapid progressive disease".

Internal jugular vein (IJV) invasion is a rare complication of thyroid cancer. But you already know that. What treatment is being offered? What precautions does he have to take to avoid a bleed?

@colleenyoung , As he’s not in pain he’s not taking any medication. He’s had treatment and operations a few years ago, as it’s now advanced they did offer radiotherapy for the invasion of the ijv, but they said they are not 100% it would actually do anything and he doesn’t want treatment. They haven’t given me anything to suggest he shouldn’t carry on as he is. Other than have a dnr in place and the dreaded DARK TOWELS!! Unfortunately I know this is going to kill him. He had a ct scan in June but nothing was said about invasion, then at the ct scan in October there is invasion with rapid progression 🤷‍♀️.
He’s due a ct scan again in January, but it’s hard to know if they are doing it just gbecause I’ve asked for it and they know he won’t be here or that he will be here.
I think deep down, I want a rough estimate of how long he has….what timeline is rapid? I’m not necessarily scared as we’ve talked about it all, but I feel like it’s Groundhog Day every day. I get up and think is today the day every day to an extent I’m even dreaming about it.
I feel mad, angry and upset that it is rare and I can’t get the information I’m looking for other than “he’s high risk”!
Sorry for the rambling!

hi lipp32, sorry to hear about your grandfather. i have that aggressive papillary carcinoma, thing is, we had no idea till the surgery where they done the radical dissection of the right thyroid, in jan 2023. 11 of 19 lymph nodes were cancer. it had a lot of invasion. then the left side were there were only a small amt. of cancer. that was march. i can hardly talk. so then the radioactive iodine in may. i had the high dose of 164.5 mci of i101. cat scan in june where the endocrinologist said it was all still in my throat area. then set up a pet scan and appt's with a radiologist oncologist and a hematologist oncologist, which is now going to be chemo to start. she gives me 6 to 10 months survival. i will be getting an mri of the brain, on the 21 of nov. so we will see what's what then. i contacted my eye dr. to see if that will hurt my already dry macular degeneration and he said it would turn "wet". so that means regular injections in the eyeball.
i wish my granddaughter was concerned as you are for your grandfather, what a heart of gold you have. i don't believe i have helped with any of your questions, just letting you know what this octogenarian is going through. god bless and take good care of grandpa, he sounds like a treasure.

@lillyann Im so sorry that you have had to read my rambling. Also I’m truly sorry for your diagnosis 😔
It’s absolutely heartbreaking for both parties involved.
We have met with St.Davids Hospice today for support and to get some medication in place if needed. They are also coming back in two weeks time, which is nice, it’s nice to have someone to talk to and say how your feeling.
My Grandad has informed me today he can feel another lump, I think deep down I know it’s months but I just want clarification from somebody in the medical profession.
As it’s likely to be a sudden happening, we are preparing everything needed for now aswel as funeral preparations.
Thank you so much for commenting, I feel I’ve got more information from this than the doctors.
I really hope with your treatment you last longer than what they’ve said, you sound like a very lovely lady, take care x