Jan 09, 2005 - 9:51 pm
In 1998, I was diagnosed with both papillary and follicular thyroid cancer after a lump was discovered on my neck. My thyroid gland was removed and I was given the follow-up I131 treatment to kill off the remaining tissue. In May 2001, my thyroglobulin was 6.6 and I was given another I131 treatment. Since 2001, my thyroglobulin continued to increase (it hovers in the 20s, 30s and 40s). Body scans show the thyroid cancer has metastasized to my lungs, with multiple lesions in both lungs (the largest lesion a year ago was 7 mm. Altogether, I have had 955 mCi (400 this year) of radioactive iodine treatments but my thyroglobulin is still in the 30s.
My endocrinologist believes the cancer is growing faster than the I131 is killing it, thus the increase in radiation. Unfortunately, it appears this has not worked, so I have a consultation with him at the end of January. In the past, he has told me surgery is too risky. He said that external beam radiotherapy would be even riskier than surgery in that it beams in on a particular spot in an attempt to kill cancer. Since I have multiple spots, the damage to the lungs would be extreme.
Is there anyone who is familiar with or has had a similar condition? If so, how was it treated; what is the prognosis. I am concerned about the amount of radiation I have had and the potential for leukemia; I am also concerned about the possibility of the cancer spreading beyond my lungs to other organs.
Any information you can provide me to prepare me to question my endocrinologist would be greatly appreciated.