r/HeadandNeckCancer • u/annyeongdoc_ • 8d ago

External Radiation Beam Therapy - How was your personal experience?

Hii, I'd like to ask if any of you had undergone External Beam Radiation Therapy (EBRT) and how was your Side effects? How bad was it? Did you have some neck disfigurements or fibrosis? Were you able to continue with your daily activities (eg. school, work), and more importantly, how did you deal, manage or prevent the side effects? How's your quality of life and are there still side effects post-radiation therapy?

Diet recommendations (accessible and realistic) and product recommendations to lessen the debilitating effects are both welcome!

Both personal experience and/or professional opinions are much appreciated!

Personal info: early 20s, female, student, Papillary thyroid CA unresponsive to 2x RAI

Thank you so much!

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u/Fryman23 6d ago

Isn’t EBRT just the regular thing we all call radiation? Like getting our 35 days of time with the old Varian TruBeam? If so, I would describe the process as torture and it’s talked about in here all time but it all depends on how long you have to be in it. Full 35 days is really bad for most. I got off lighter than most and was only incapable of swallowing water or food for 2 weeks. My turkey neck is just now growing in because im only 7 weeks post treatment and 45 years old so I don’t know what will be permanent. It’s a hell of a hair remover though. Maybe you will only need a few weeks instead of 35 days.

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u/createusernameagain Valuable Grump😊 3d ago

I was kind of thinking the same thing, most of us probably are which is why there is little discussion here. Still not sure what "unresponsive to 2x RAI" means, getting nothing on search.

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u/Fryman23 3d ago

That’s radioactive iodine, the RAI. I listened to a fantastic Ologies podcast on the thyroid gland and they talk about it at length. Hopefully OP has read some of this sub and seen report after report after report of radiation experiences. I can sum my experience as an otherwise healthy 45M as being the most horrible thing I’ve ever been through. I didn’t know I could personally feel that shitty at all but particularly I didn’t know I could feel that shitty for that long (and I didn’t have as bad a reaction as most!). But again, she might not need the full 35 days.

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u/createusernameagain Valuable Grump😊 3d ago

Ahhhh, I didn't know they still used RAI but it makes sense asking what the difference is between the two. Had some flare ups at first but got over it pretty quickly, wasn't happy with 3rd degree burns but healed fast from that too. Oddly I don't remember much of it, guess it was my attitude of "we're doing this now" and having so many helpful and support from here made it go by faster. Doing way better than I should so to speak.

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u/Fryman23 3d ago

That’s fantastic to hear! Keep it up! How far out from treatment are you?

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u/createusernameagain Valuable Grump😊 3d ago

I always have to check my calendar now, seems like a distant memory. 7 weeks last Friday.

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u/Fryman23 3d ago

Awesome! I’m at 8 weeks and feel great now. I’m hiking and trail running again. My taste ability is still wonky but I recently started being able to taste bitter again which makes coffee enjoyable. No real throat pain but my tongue sometimes gets the fuzzy feeling depending on what I’m eating…I think salty stuff might trigger it. Now I’m just trying to manage the stress of the upcoming PET scan and sacrificing goats for a NED result.

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u/createusernameagain Valuable Grump😊 2d ago

My sense of smell and taste came back pretty quickly, it wasn't fully wonked out though. Glad to hear you are getting in all the outdoor stuff before summer actually ends ☺️

Same about the PET scan I have coming up as well.

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u/Fryman23 2d ago

I wish you the best for your scan!