Well I have spoken to the endo and met the new radiation oncologist. As always it was enlightening. I think I will call it the good bad news
The best news is that the PET scan showed the cancer is confined in the one lymph node but the scan also showed some issues with my heart and gastro stuff. Hmm, ok another day and another dr but cancer is on the top right now
Loved or greatly liked the new rad onc. He did some medical school at Sloan Kettering. He said my case is very different and dh liked his new saying that his professor taught him - no tumor follows the textbook!! lol
He said some interesting things
Yes he agrees my cancer is so rare and they only get one or two pts. a year with it.
Its even more troublesome that my tsh did not rise in the blood work, so in the future determining the cancer by a blood test will not be a reliable source of checking the cancer marker numbers, sigh. He said only one of his professors at Sloan Kettering ever had a case like this that he mentioned and he learned of in his career so far, gheesh.
He didnt say this so much but the oncology nurse said - since I have had a really high dose of rai and it didnt do its job, the rai then its more probable that I will test out as non avid with the scan.
If I am non avid there was some mention of possible external beam radiation or just watching it, sigh
He said if I am avid then the rai dose will have to be high at least 150 and more than likely closer to 200. 6oo is the lifetime maximum dose and he agreed with me about my concerns of a secondary leukemia cancer, sigh.
He will confer with the endo on things.
The nurse and surgeon both mentioned Dr. S. the surgeon who almost killed me. I said, sorry there is no way I am going back to that guy who almost killed me. Nurse mentioned another dr. I called him Doogie Howser,.
They did exactly what the endo said they would - play politics and try to get me to have the surgery there. I said I will just take it one day at a time and do this testing first, The onc. nurse then mentioned another dr. and she said, oh but he is near the city. I didnt mention him, she did and I played dumb because its the exact dr. I am thinking of, the one who had a fellowship at MD Anderson, so that seems to me that they do regard him as capable for patients,,
My head is spinning. I will do another post of the lid, that is more head spinning.
I start the lid on monday. Keep praying.