Papillary Thyroid Cancer: Any experiences to share?

Hi Don,

I'm going through the VA so I feel like the information I get is kind of...muddled. The endocrinologist is in a hurry to get me referred to a specialist, but I'm still in the process of that. She was kind of vague on whether the cancer is the cause of my symptoms other than the fatigue. The only reason I was even diagnosed is because I went to the ER for chest pain in December (unrelated issue) and found a nodule on my thyroid when they did a CT scan.

@namwob87, I'd like to add my welcome and introduce you to other members who have experienc with papillary thyroid cancer and who can share the symptoms that led to their diagnosis, like @lilyann @roya81 @xyzck88 @koh and others.

@namwob87, have you been able to get an appointment with a surgeon in the meantime? How are you doing?

I was diagnosed with that 30 years ago. The endocrinologist I went to in Chicago said leave the other half of thyroid in and get ultra sounds every year to see if nodules are growing. There's also a blood test they took to see if I had cancer growing each time I went for the ultra sound. Once in a while they would do needle biopsies of the nodules; if they grew some times they would shrink. I haven't been back to get these ultra sounds in about 10 years. I'm ok, but have a had a bad cough the last couple of months due to a cold. It is still lingering though. Coffee can make the nodules grow. Doctors put me on a higher level of levothyroxine to suppress any growth of the nodules.

hi debbieliv, lilyann here, i was originally told that my cough was due to thyroid issues, back in 2020, long story short. 2023, two operations for thyroid cancer, coughing on the operating table for heavens sake and guess what..........2024......still coughing. so i do hope yours is only from a cold. wishing the best for you. i do have to say though.........levothyroxine........is from my reading...only for the thyroid hormones you need because of removal of the thyroid. i did try to not have the 2nd operation, but the surgeon wouldn't hear of it. i did have the cancer on the left side, it was radical surgery on the right side with the big nodule that had grown from 2020. take care and thanks for the "like". wishing you the best.

Hi Lilyann,
I had 1/2 my thyroid removed which made me hypothyroid so that is why I take the levothyroxine. They wanted to remove the other half, but then I went to the specialists in Chicago and they thought I could wait and monitor it. The specialist said that they find a focus of papillary cancer in 5% of autopsies. Anyway I went to two specialist one in Chicago, his name is Degroot - he wrote the book on Thyroid I guess; he seemed like I could wait. Anyway I guess it was a small amount; but that was 30 years ago and for 20 years I was monitoring it. Also just because it was in one nodule, might not be in the others. The hospital at the time seemed like they were surgery crazed. Thank you for sharing your story.

hi debbieliv, lilyann here, yes, i do believe you are correct as far as some trends like hysterectomies were back in the 70's. i am so glad that things did work out for you and i believe from all my reading now that you probably did not have the aggressive papillary cancer, so i am very happy for you. on the second surgery is when i found out that my papillary was aggressive and guess what, now its listed as differentiated cancer, meaning right next to the anaplastic. which is the worst one. i had no idea what a journey it was going to be and when i got the radioactive iodine, high dose, did not know and that was after the second surgery. so the storms of life are still going on. again, so happy for you and so glad you wrote back to tell me. they also told me.......that if i did not have the surgery, that i would have been long gone. so it bewilders me as to how they come up with this and that and the reason the radioactive iodine did not kill off the rest of the cancer as they said it would..........because of the anaplastic. so we learn from one another and i have surely learned from being on mayo, don't know what i would do with out all the people that write in and so glad for each and every one of them. so you take care.

ok, glad you're getting better; hope the cough relaxes and goes away. And I agree it's great to share stories on here. Debbie