Does anyone have any questions about papillary thyroid cancer?

lilyanne here, i had my thryoid out at the age of 80 and have to wonder why i did that at times. i had the lump in my right side which did increase from first ultrasound. you could visibly see it. 11 of 19 lymph nodes were cancerous. i had this cough from that time and still have it and was coughing my head off even on the operating table. coughing my head off while the radialogist was telling me what all was going to go on while being radiated and i'm still coughing and always scared i was going to cough in those MRI and PET scan machines. so glad i didn't. they said if i didn't have the surgery, which ended up being 2 in jan and march of 2023. i would not have survived. then the endocrinologist said i need to have the radioactive iodine and that would take care of any left over remontants of cancer cells. which ended up being the highest dose, which then i found out later wouldn't do any good with a differential cancer. so i wonder why they had me do that in the first place. then seeing the oncologist, first she gave me 6 months to live and then another 6 months. and here i am wondering why i had that surgery in the first place. so this is now such a rollercoaster ride that i am ready to get off. i am tired of the monthly blood draws, the needles at the times of MRI'S and PET scans. the contrast. i have this meneirs' syndrome and this dizzyness is really getting to me as my head feels so full all the time and heavy like i am drunk but i have read something the other day which i might think is my true problem going back to when they said my c-5, 6, 7 disks has degenerated. which then led me to cervicogenic dizzyness. so i needed someone to talk to and i read your story. so here i am and then too, do you know that the levothyroxine pills, so of course, its from the company that i get mine from, well, it showed it wasn't the 100mcg. that i take. but, you have to wonder well then how would that be possible if all the other mcgs. were affected, how did they miss the 100mcg. its a company in india. i did contact the endocrinologist to ask him some questions to which he said to call the pharmacy which told me mine was not included in the recall. so my MRI did not show any cancer has spread to my brain so i have been blessed. i am still here with the lymph nodes still enlarging in the neck area. i still feel the strangulation every day that i felt right from the start of the biopsy when the 4 needles were stuck in me and the next day i asked my RN sister who asked me if i could breathe and i said yes, but it feels like someone has their hands on my neck and squeezing. i lost my voice after the surgeries also. can't really have a conversation with anyone because its really difficult to express yourself. sorry for the long story. wishing the best.

I read your comment and I was thinking that maybe you may want to get another opinion from another endocrinologist that works with thyroid cancer patients. Differential thyroid cancer is probably a variant of papillary thyroid cancer called follicular cancer. Papillary thyroid cancer is really really hard to understand there’s so many variants. I am wishing you the very best going forward please take one day at a time. Very best of luck to you!!!

@meghansa65 I am just an insomniac - the minute my head hits the pillow my mind starts racing! I play online games in bed on my tablet till my brain gets tired enough for me to drift off to sleep. I know devices are frowned upon, but for me, that is my “sleeping pill”. Word games are my favourite.

@lizzymbee Hei do you have lung metss? I was diagnosed papillary thyroid cance BRAF V600 om march 2025. I am 65 years old. I hope you will share your nutrition, healty life style. Did you get immununotherapy, what kind? How about Lenvima? Thank you for your reply.

Hello @meghansa65 !

Thank God my lungs are clear! Yes, I was on lenvima - which (I believe) turned the mass on my neck necrotic. Then I was on Ketruda which was very effective. The mass on my neck actually abscessed (as it was into my skin) - it's now much much smaller with scar tissue and may be operable soon. My tumor numbers went down, however, after about 5 months, I did have side effects from Keytruda, so I had to pause it. My side effects have now subsided and doc is trying to get me on a clinical trial of Ketruda that addresses Pembro side effects so that a patient can stay on it longer without interruption. Pembro really helped me.
Other than that, I do supplements, including curcumin daily. I also incorporate flax soil - (see Budwig plan). Walking is very important for my blood pressure and overall mood and strength/balance. I rest/sleep a lot and try to avoid stressful. Prayer of course is a lifeline - we must keep in a hopeful state of mind. I also try to get sunshine/outdoors daily even if it's only for 15 minutes or so. (Some old hospital used to have solariums you know.) Pretty much everything I eat is anti-cancer. I try to stay away from sugar as much as possible, although I'm not always perfect. I was doing a low carb/keto diet, but since side effects, have been incorporating sourdough bread lately (it's good for the gut). Also, did you know that eating cacao is good for you - it brings out stem cells from the bones. So I do take high (84%) dark chocolate every day. I have a wonderful oncologist and follow Dr. William Li on Youtube. He also has a great book out "Eat to beat Disease" . So much more to tell, but I've definitely been unabridged here, so I will say God go with you and may you be blessed my friend. 🙂

@lizzymbee Hei again! thanks for your wonderful reply. And I hope I will be better like you. I am very happy to read that your lungs has been cleared. I have 40 lung nodules, how about yours? I am 65 years old when I got diagnosed, how about you? Thanks for wishing meg well and i am very touched "God go with you and you may be blessed my friend" I pray to God all the time to give me more time. And once again, thanks for sharing.

Hi the bottom line is it can’t hurt to always eat healthy and nutritious foods !!! if the doctor has you going to special diet it’s important to follow the diet that your doctor gives you for your particular situation!!! Good luck to you going forward!!!

@meghansa65 my daughter (in her mid forties) was diagnosed with papillary thyroid cancer and had surgery about a month ago to remove her entire thyroid. She is doing well. She will need to be under the regular care of an endocrinologist.

The good news is, we have heard that thyroid cancer is one of the most treatable of cancers, and the prognosis is good. We know, and know of, others who have been living with this cancer for as long as twenty years or more, which gives us hope for our daughter.

Papillary thyroid cancer is definitely the most treatable of the thyroid cancers. Prognosis is very good for papillary thyroid cancer. The bottom line is your daughter will be fine being followed by an endocrinologist who has experience with patients who have papillary thyroid cancer. My very very best wishes to your daughter!!!

@lindaadele thank you. My daughter is back to normal activities. Not letting anything hold her back! 🙂