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Follicular Clusters related to Papillary Cancer Recurrence?

I had papillary carcinoma in both lobes, isthmus & parathyroid in 1996. They were able to save a tiny bit of upper right parathyroid. Cured. No radiation. My endocrinologist monitors it with ultrasounds & occasional FNA. Thyroid tissue started growing back with nodules in 1998 & she increased my thyroxine to stop growth.

My endocrinologist did a needle biopsy because one of the nodules grew. She sent it to a cancer center for further testing after she examined it because the cells looked like follicular cancer. I saw something on the internet that said follicular clusters could be an indicator of nearby papillary or follicular cancer cells that weren't captured in the biopsy. I also read they have more false negative than false positive identification results, but there seems to be very little information available. What is available is almost incomprehensible.

I have pain swallowing (even saliva), pressure pain on the sides of my esophagus & trachea that hurts more when I talk.

My endocrinologist wants to wait 6 months for a followup ultrasound and may do another needle biopsy then if it grows like cancer. I'm afraid to wait because I might have cancer that's already spreading in my throat.

Does anyone know about follicular clusters and what they mean or what I should do.
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replied September 13th, 2011
Extremely eHealthy
I don't know anything about follicular clusters, but if it were me, I would get a second opinion. If you can't find a cancer doctor that has experience with thyroid cancer, I would look into seeing an Ear, Nose, and Throat doctor with experience with thyroid cancer.

When you go to the second doctor, try to get copies of your records faxed over ahead of time. Then also have a rough timeline of everything that has happened with your thyroid written out yourself (tests, treatments, surgeries, etc.), along with a list of your current issues and symptoms. Bring this to your doctor visit as well. The doctor might not have time to look over your entire medical record beforehand (if yours is anything like mine it's a couple inches think) so a brief outline would be helpful to go over at the visit. Also, write down any questions you have for the doctor beforehand because it's easy to forget them at the appointment.

Also, you said you didn't have radiation. You didn't have any radioactive iodine (RAI) treatment at all? And no RAI scans at any point?

I hope you get the answers you are looking for. Let me know how things go and if you have any more questions you need help with. Best of luck. Smile
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replied September 19th, 2011
Thanks. I got an appointment with a thyroid cancer specialist tomorrow. He scheduled an appointment after reading my biopsy records. The original records aren't around anymore, but the hospital provided surgery records. They said I have "Papillary Carcinoma of the Thyroid - Follicular Variant" The largest nodules are 0.5 and 0.7 cm with the largest "which grossly appears to approach to within less than 0.1 cm of the capsule." That creeps me out. I'm going to outline the diagnosis page because it's real hard to read(old time fax noise) & arrive questions & outline in hand. I'll let you know what he says. Thanks for the advice!
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