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

I had the same condition.
I passed out when I got my results. Turns out this cancer is slow growing. Mayo Clinic was awesome and the biopsy was not painful. My doctor recommended taking out half of my thyroid because nodules were only in one side. My four parathyroids were preserved and my margins were good. I would suggest to your husband to be positive and to sure to have a cancer doc instead of an ENT.

Hi. You can do this and be informed, caring, and strong for your guy. We have to learn about the thyroid and surrounding glands and organs. Get the best care you can, based on where you live. I am very fortunate I decided to use Sloan Kettering in NYC, rather than my local care in NJ. My cancer was outside the thyroid and plastered to the trachea. My surgeon only does thyroid cancer surgery. My oncologist specializes in head and neck. I will need radiation and chemo.
I am not saying these things to frighten you, but rather to encourage you to get the best care possible.

Papillary is the least scary of Thyroid Cancers. But....cancer IS scary. Last year I was told that I had lung cancer. I actually had histoplasmosis in my left lung. 8 months of treatment and that's under control. While they were looking into that, they found Thyroid cancer. Five months after finding it, I had a Total Thyroidectomy. While removing the Thyroid, they checked adjacent lymph nodes. They performed a central neck disection, removing 8 lymph nodes, two had malignancy. So did my parathyroid (also removed). Recovery wasn't fun but was just short of two weeks. It was an outpatient surgery. This was the beginning of December. The drain was the worst part for me. I returned to work after two weeks, feeling pretty good, just tired. I was still recovering from histoplasmosis as well, so tired really was my new normal. In February, I did radioactive iodine pill. It was very scary to swallow a pill that you weren't allowed to touch and being told to leave the hospital immediately. That went well. I felt hot and a little nauseous for a day but got some good sleep. You're secluded for at least 5 days. Recovery went well. I went for bloodwork every 3 months. I am over 55 years old so a little higher risk. This November, my tumor markers jumped. I never got below .7 thyroglobulin level. The doctor wanted to see that number undetectable. I had another ultrasound and a nodule was found on a right cervical lymph node. My biopsy confirmed another metastasis. Planning to have a right neck dissection to remove all lymph nodes in that zone. Doctors on tumor panel will discuss further treatment after dissection. The doctor stated that Thyroid cancer will not be fatal, just inconvenient. The journey is scary, but it is still curable.
I would recommend a total thyroidectomy so there is less chance of missing anything. They were surprised to find that mine had spread to both sides and lymph nodes. My scans didn't show it. My doctor said there is always a chance of having to go back and have the other lobe removed if you opt for a lobectomy. I was hoping for a one and done. The difference was having to be on thyroid medication forever. It's just a little pill with no recorded side effects to date.
I wish your husband good results and good health going forward. I hope you have a wonderful holiday.