Monday, April 22, 2013

".... don't you know i'm still standing better than i ever did. looking like a true survivor, feeling like a little kid. i'm still standing after all this time. picking up the pieces of my life without you on my mind. i'm still standing, yeah, yeah, yeah. " i'm still standing , by elton john

after several calls back and forth to my endo, don't you just love, love phone tag? i found out that my endo HAS been using color, doppler ultrasound. as to why my test only takes about 5-10 minutes and not 45 as recommended by thyca, i can not be sure. my doctor's nurse assured me that they were using the correct test ( she called the place that i called for a second test ) which will detect small movement in blood flow around small tumors or suspicious lymph nodes. i feel better, but at my next test- in september- i am going to be armed with lots of questions for the ultra sound technician, as well as my doctor. i will resemble someone from the " show me" state, you can be sure.

it took me a long time to get my cancer diagnosis. i wasted valuable time, literally, listening to another endo tell me that my " weird " blood tests were caused by stress. after a time, too long admittedly,  i left his practice to go to my current endo. she ordered the biopsy, and the rest is history, i guess. because of this, i am passionate about thyroid and thyroid cancer patients getting second opinions if they are not comfortable with their condition or treatment. patients should read books, go to respected internet sites,keep copies of their tests,just  to name a few things. everyone should be their own patient advocate. think about it- you need to be able to trust your doctor of course, but what you are dealing here is your life. 

i faxed the sheet from thyca with the ultrasound information to my doctor. she asked that i do so. i appreciate that she is interested, and never has used the word " stress" with me! everyone has stress of some sort in their lives, and it certainly affects our lives and overall health, but sometimes it becomes the easy out. instead of digging into what might have been causing my strange blood tests, fatigue, etc. my former doctor chose to blame it on stress. when i was diagnosed with papillary thyroid cancer i was already in stage three. it had spread to two of my parathyroids and lymphatic system. i wish that i had been diagnosed earlier, of course, but at this point i can just go forward. i have to pay attention to what tests are being done, how i feel, and while i trust my doctor( she saved my life) i have to still do what is best for me.

in my practice, i seem to be a magnet for thyroid cancer patients. i  met another person just  this past week. he came in to ask about a vitamin  to boost his immune system, (FYI: vitamin D is much better for that than vitamin C ) , but on further discussion, i learned that he was a "new" thyroid cancer patient. he had just had his surgery and was facing the I-131 treatment. he did not know what kind of thyroid cancer that he had, what stage he was in, or anything at all about the I-131. i told him how the I-131 works, and what side effects he might encounter. i asked him to please come in and ask questions, and i would do my best to help him. i also asked that he please let me know how he is doing.

some people are just lucky i guess. they move through life and get the correct treatment without any effort on their part. but in the majority of cases, we must make good choices and be informed if we are to be successful in taking care of ourselves.

Sunday, April 7, 2013

"...whether you're a brother, or whether you're a mother, you're stayin' alive, stayin' alive, feel the city breaking and everybody shaking, and we're stayin' alive, stayin' alive. the wings of heaven on my shoes, i'm a dancing man and i just can't lose. going nowhere, somebody help me, ...yeah, i'm stayin' alive, stayin' alive. " stayin' alive by the bee gees

it seems that i have a wee bit of a problem. i still  have thyroglobulin antibodies. i would not have known this, but i requested a copy of my last blood work for my records- remember that i am always telling people to do this? get copies of your tests and labs and put them in a folder so that you will know what your "numbers" are and can make intelligent, knowledgeable decisions. my doctor did not go over this with me when i was in her office last time. she went over my other  test results- no thyroblobulin, and nothing showing on the ultrasound..... now, here is the tricky part of the report- the one i just happened to see when i looked over the results.

some people( i just have to be different, i guess) have thyroglobulin antibodies. these attack, or work against, the thyroglobulin in our bodies. sounds good? no, not really- if you are a thyroid cancer patient and your doctor is measuring the thyroglobulin in your blood stream to determine if you have recurrent disease. if you have thyroglobulin antibodies like i do, and they have not gone away( some people have them at first, then they go away, to wherever, after the surgery/ I-131. ) then you could get a FALSE NEGATIVE report. in other words, you could be celebrating good news a little too early.

according to new research reported by thyca, " an ultrasound should be one of the first tests in monitoring a patient for recurrence, especially in patients where thyroglobulin antibodies are an issue". of course you probably remember that i said that my doctor always does an ultrasound at my "testing time" along with the blood work. thyca recommends that the device needs to be a POWER DOPPLER AND COLOR DOPPLER in order for the entire spectrum to be seen properly. doppler ultrasound detects the movement of blood around tumors. increased blood flow can be a strong marker for a tumor. not only that, but the scanning procedure should " take at least 45 minutes in order to be thorough". and it gets even better: " the average ultasonography technician may be very good on other ultrasounds, but requires special training for thyroid examination."

jeez. my ultrasound took no more than five minutes. and i am pretty sure that it was not a power/color doppler. i am not sure how much training the technician has, but i am fairly certain  that the ultrasounds i have been having over the past two years have been, basically, worthless. now what? i know that papillary thyroid cancer, even" stage three, and intermediate risk"- which was what mine is/was has a pretty good survival rate. unfortunately, it also has a rather high recurrence rate- which is about 30%. i also found out from thyca that there should be " lifelong surveillance". EXCUSE ME, but with all the stress that comes along with testing, i need to know that at least the tests are accurate. i have no problems with the blood work part, but i am now going to try to locate a facility that uses the power/color doppler. i am not sure how i will do this, but i am going to start looking now. my next test is not until september, but honestly, i need to have this done pretty soon- and with the correct equipment.

i would like to have this test done in the winston-salem, charlotte, raleigh-durham-chapel hill area, but if need be, i could go outside of north carolina. if anyone out there knows of a place where i might get the power/color doppler done, please shoot me an email. i would really appreciate it. i probably do not need to say this at this point, but everyone out there, please keep copies of your tests and blood work. be your own patient advocate, and best health and best wishes to everyone.