Sunday, March 12, 2017

"get up stand up. stand up for your rights; get up, stand up. life is your right, don't give up the fight." from get up stand up, by bob marley

lately, i have been reading comments thyroid cancer patients have been posting about inadequate care, during or after thyroid cancer treatment. my first thoughts were that there should be a "national protocol of treatment" for thyroid cancer patients. after careful consideration, i realize now that this is not exactly possible. one reason is that  there are different types of thyroid cancer ( papillary, follicular, papillary or follicular variants, medullary, and anaplastic) so there is not really a one size fits all treatment. also, every age group- from small children to adults can have thyroid cancer. so this would influence treatment and after care.

what really disturbs me, is that too many people do not realize that with thyroid cancer you will require life long monitoring. the percentage of recurrence with thyroid cancer is about 30%. it is very important that if there is a recurrence, that the cancer is found quickly and treated. i have read that although more people are being diagnosed with thyroid cancer, it is projected that more patients will die of thyroid cancer in 2017 compared to 2016.

this is where the statement that i am always preaching comes in: " you need to be your own best patient advocate."it is good to search the internet, but please go to reputable sites. "Thyca: thyroid cancer survivors association" offers excellent advice about diagnosis, treatment, testing, long term monitoring,etc. i think that this is the gold standard for every thyroid cancer patient. if you have not been to this website, do so now! there are excellent books on thyroid cancer- two of my favorites are by Mary Shomon, and one by M. Sara Rosenthal. ( you can purchase them from amazon if they are not stocked in your local book store). an informed patient is one that will live a better, and longer in my opinion, life.

so, you have obtained your information from Thyca, and possibly some books, so where to now? the next step is to find a good physician. and by "good" i am talking about a physician that has experience treating thyroid cancer patients, is good at her/his job, and most importantly, in my opinion, is willing to listen to patient concerns and adjust the treatment accordingly.

i will use myself as an example. i have an excellent endocrinologist, i think. some people choose not to go to an endocrinologist, and that is entirely up to the patient. but just remember that an endocrinologist treats ONLY patients with thyroid disorders or diabetes. i have just had a medication change from levoxyl ( a synthetic t4 only drug) plus cytomel ( a synthetic t3 only drug) to Nature-throid, which is a naturally derived t4 and t3 combo drug. i have been feeling better on the Nature-throid, but was still having some "hypo" symptoms. added to this, my blood work had changed from the time before. my tsh was up, my t4  and t3 were down. my endocrinologist felt that my blood work numbers looked acceptable, but i was not comfortable with them. i asked her to increase the dose of my Nature-throid and told her that i would stop taking the cytomel( it was causing nausea). she agreed to this, and has ordered more blood work to be done in may.

i am highly respectful of my doctor, but i appreciate the fact that she takes into account how i feel, and does not just rely on the lab values. if i tell her that i am not feeling well, she will make adjustments until we come up with something that satisfies us both. a good doctor/patient relationship is crucial to success in treating any disease. since thyroid cancer requires life long monitoring, i think that it is especially important that thyroid cancer patients find a good physician that is willing to listen and compromise. it took me a few years to find a physician that was a good fit for me. don't give up!

in my next blog i will discuss after care, long term monitoring, and follow up testing. another tip for you- it really helps to have a notebook in  which you can file all of your test results, blood work results, office visit summaries, and perhaps articles that you find helpful about thyroid cancer. i bought a 3 ring notebook and have found this to be invaluable so many times over the years. having my test results at my fingertips not only helps me, but actually my doctor has found it useful a time or two, also. even if you did not start the notebook at the beginning of your thyroid journey, you can still start one now. it is part of being your own best patient advocate.

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