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lipp32 (@lipp32)

Recurrence invading internal jugular vein (IJV)

Thyroid Cancer | Last Active: Nov 15, 2023 | Replies (4)

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@colleenyoung

@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?

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Replies to "@lipp32, I can imagine that you are very scared for your grandfather and at your wit's..."

@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!