Thyroid cancer recurrence

[Abby515]

I had a thyroidectomy and RAI for Papillary thryoid cancer. Because of an elevated thyroglobulin level I had an ultrasound done in October, 2007 and the radiologist said there were possible nodules that needed to be further evaluated. I had a TMS scan which did not show anything so then I had a PET/CT scan done which showed several spots in my neck. I was referred to a radiation oncologist to be treated. I had a biopsy, then surgery, and radiation. I was told RAI would not help. After the radiation was completed another PET scan was done and the doctors said it showed "remarkable uptake in the neck and supraclavicular region". I have read that PET scans can sometime have false positive results. I feel terrible with headaches, tired, and no energy at all. I do not know what the next step will be to try getting rid of the cancer. What might be the next step that will be taken and are there any suggestions about how I might feel better? I have mentioned the headaches to the doctors and was given a prescription for them. I understand my oncologist and endocrinologists are the only doctors who can tell me for certain since they have the medical records but I do not have another appointment with the radiation oncologist until Wednesday.

Thank you.

[dee188]

hi diane, i had a total thyroidectomy way back in 1993 for papillary cancer and had no problems whatsoever untill the new consultant took over from a very old endocrinology doctor then it was test after test, they have found thyroid cells in the thyroid bed and i'm waiting for RAI treatment, i would have had it done by now if they had not lost all my records from 1993 to 2000 but thanks be they have now turned up. Apparantly they couldnot give me the RAI until the records were found because i had radioactie iodine ablation just after the operation and they needed to know what dose i had, anyway i just wanted you to know that you can have  a happy life after thyroid cancer so make sure you enjoy every day, god bless

[Mark Lupo, M.D.]

Assuming this was external beam radiation (not commonly used for papillary unless not surgically resectable and failed I-131) - then the post-XRT inflammation would possibly cause increased metabolism (false positive) PET readings in the neck.

Make sure your thyroid levels are normal as this may be cause of headaches.  Also, XRT tends to make eating/swallowing more difficult so make sure you stay hydrated and with adequate nutrition.

[Diane1107]

Oh my goodness.  I feel so bad for you.  It's so terrifying but it sounds like it's going well.  Rely in the doctors and if you don't feel comfortable with one, Get another quick.  

I had my total throidectomy Feb. 29th, yes a week and a half ago.  Just got back from the doc, surgeon.  I have a very weak voice and can't swallow.  I panic at times.  He said I have fluid and tried to apirate fluid with a needle and vacuum chamber.  Wasn't too bad but I don't want it done again.  Now scheduled for a CT scan on Wed.  Shucks.   Diagnosis, papillary cancer but surgeon said margins are clear and it's looking good.  Well easy for him to say.  

So if you want to talk, goodness knows we need someone in the situation who understands.  Please let me know.  I don't know this web site very well but will try to watch for any correspondence from you.  I have 4 weeks to go before my RAI and then the thyroid meds.  I understand I will get real tired too.  Let me know how you feel.

Hugs,
Diane