1. I have papillary cancer, stage 3, and was diagnosed in April, 2010. i reluctantly call myself a survivor,as i will feel better when it has been a year or so, from that date. i am still concerned about my lymph nodes- the surgeon removed some, as the cancer had spread from my thyroid to some of them, as well as into two of my parathyroids, which were also removed.
2. Thyroid cancer awareness is now like a mission to me. i am in health care, and i have met some other thyroid cancer survivors, or those that have had surgery. i relish the chance to talk to these people. i met an 84 year old man the other day- he is just starting his "thyroid journey" and we talked a little bit about the possible hypo- side effects and he told me about the problems he is having. i appreciate the opportunity to help others who may be going through this ordeal.
3. I know that when people tell you "thyroid cancer is the good cancer" they are just trying to be helpful or positive,but the first time someone told me that ( and i had not even read about how we all hate being told this!) i was thinking: well, o.k. if you think it is so good, you can have mine!! but to be honest, because i think that people really do not understand, i try to explain that while the survival rate is better than say, pancreatic cancer, this is a serious disease and the treatment is anything but a walk in the park. i try to educate them -in a nice way, of course.
4.I would also like to make people aware of the RAI treatment. most people think that this is not nearly as invasive as traditional "chemo". no one that i have talked to( except for thyroid cancer patients of course) has any idea of side effects- short or long term. and they think that being in isolation would be a welcome break- a chance to get rested up, so to speak.
5. Thyroid cancer seems to be growing in numbers. everyone should be checked for this- if they have family members who have had thyroid issues, or if they have symptoms. they should do a "thyroid neck check" and talk to their family doctor about this. i would like to see this cancer get the growing attention that Colo-rectal cancer has been getting over the last few years. i think that the "good cancer" image is contributing to a lapse in awareness or concern about having thyroid cancer.
6. My most important advice to a newly diagnosed ( or at any stage, for that matter!) thyroid cancer patient is to be informed! buy some really good books on thyroid cancer. one that i recommend is " The Thyroid Cancer Book" by Sara Rosenthal. also, go to great websites like Dearthyroid, or Mary Shomon's website" aboutthyroid.com." you MUST take control of your health! as well meaning and good as our physicians/surgeons may be, you are ultimately in charge, and must see to it that you get the care that you need and deserve.
7. i have many funny thyroid cancer related stories. i like to find the humor in things, and would definitely rather laugh than cry. probably my favorite story involves a med tech at the hospital where i was getting my RAI treatment. my endocrinologist decided that it would be a good idea(!) to get blood work done only two days after receiving my large dose of I-131( 154.9 milicuries).the following is a part of my blog entry after this visit:
" Mmm,ah............................. ARE YOU PREGNANT?!!"
i had to ask the med tech first thing, before she got too close to me. instinctively, her hand when to her stomach to smooth her top down. i could almost hear her thinking:" I wonder if these pink scrubs make me look fat??" then i saw sparks of fire coming out of her eyes. good job, bea, she has a 20 gage needle headed straight for your arm and you made her really mad! she said, " of course not!!". but she could have been, i mean she was not too old or anything. when i explained why i asked, she calmed down, and actually thanked me for asking.