Monday, September 2, 2013

" you better watch what you say. You better watch what you do to me. don't get carried away, girl if you can do better than me, then go. but remember, good love is hard to find, good love is hard to find, you got lucky babe, you got lucky babe, when i found you. " You got lucky, by tom petty

well, things never go quite like i want them to go. is this the same with you? i have an ultrasound and blood work scheduled for the end of this month. then, my doctor's appointment is on october, 3rd. my endocrinologist has decided that she needs to talk with me about the PET scan before we decide if " we" want to do it or not. o.k. i will lay out a few facts and then maybe there can be a decision made if " we" want to do the test or not. these are facts that i have gotten from the website. this website contains  a world of information for thyroid cancer survivors, and if you have not checked it out, you really should.

when i was first diagnosed with thyroid cancer, i thought that after, oh say, maybe, 5 years of testing, if things were good then i would be considered cancer free. well, that is not the case! i now know that while the prognosis for most thyroid patients is good, the rate of recurrence is about 30%. i see percentages differently than i once did . when i was having my thyroid nodules tested, the doctor said, " don't worry- only 5% of these nodules are cancerous." however, if you happen to be in the 5% whose nodules are cancerous, it takes on a whole new meaning. in other words, 30% looks pretty significant to me now. at the very least, it is a number to be concerned about. it is recommended that all thyroid cancer patients have lifetime monitoring.

those pesky anti-thyroglobulin anti-biodies (TgAb) . i have them. they make the blood work for the thyroglobulin basically worthless. sometimes, these disappear after six months. mine have stuck around- to annoy me, i think. unfortunately, i did not have the Tg or TgAb testing done before my surgery, so i have no baseline to compare my blood work to. that would have been so helpful, but i did not know about it then. that is one reason i try to get people to be informed- read all that you can about your condition, and keep all blood work and test records. you have to be your own patient advocate. it is recommended by thyca, and other sources, that if you have the TgAb, you need imaging studies done. i am not sure if this means just the neck ultrasound, or if it also means the PET scan. i have read various opinions about this. i do know that my radiologist- the doctor who administered by treatment dose of I-131- told me that when thyroid cancer spreads, it usually goes to the bones and lungs. i have only had one chest x-ray( the radiologist ordered it), and a few blood tests to measure abnormalities in my bones( ditto- radiologist). i am not sure if i need these repeated, or how often.

my surgeon told me that i had had thyroid cancer for several years before it was discovered. i wasted five years going to another endocrinologist who told me the reason i was so terribly tired was due to  " stress". i finally decided that i had had enough, changed doctors, and well- the rest is history. i do not want to be neurotic about my health or testing. i do want to be responsible and have the appropriate tests done, and treatment if i need it. i just want  to be informed about my condition and make good decisions about my health care. which really applies to anyone living with a chronic health condition.

so, the jury is out you might say on the PET scan. i will discuss things with my doctor and of course let everyone know the outcome. i am planning to take my trusty notebook along with me to my next doctor's appointment. my doctor is used to this. one time she even asked me to check something in my lab reports( of course i had it ) that was left off of my chart. never hurts to be prepared, i say!

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