there seems to be a lot of discussion going on about the use of RAI, and at what dose. when i received my treatment dose of RAI for thyroid cancer, back in 2010, i received a large dose- 155 millicuries. that was 55 millicuries above the, i guess you could say, " average" dose of 100 millicuries. it was not so hot of a topic- excuse the pun- back in 2010 when i received my dose. yes, i knew i was getting a larger than average dose of the RAI. my endocrinologist thought that i would be receiving 100 millicuries. the radiologist who was treating me with RAI after my surgery recommended upping the dose to 155 millicuries. he based this on the facts that: although i did not have a positive lymph node, i had had several tumors which had burst open and spilled out into my lymphatic system. i had an aggressive area of follicular thyroid cancer in addition to papillary thyroid cancer. and finally, i also had two parathyroid glands that were cancerous as well. i might add here that to have thyroid cancer spread to the parathyroid glands is rare. sometimes the parathyroid glands are damaged in the surgery and have to be removed, but rarely are they themselves cancerous.
at the time of my surgery and subsequent treatment with the RAI, it was considered a " no brainer" decision. my endocrinologist told me that " even the most brilliant surgeon could not possibly remove all of the thyroid cancer cells." i knew a little about the risks- especially the highly debated possible connection between RAI use and breast cancer. this link has still not been proven. i will disclose here that in 2015 i did in fact have breast cancer. do i feel that the RAI was a contributing factor? i am not sure. there is no hard evidence that a treatment dose of RAI can cause breast cancer. the general consensus has been that one should treat the cancer that one has, namely the thyroid cancer. just be sure to have regular mammograms, which i continued to have on a yearly basis.
one thing that i do know for sure is that RAI can cause salivary stones. about 7 months after my treatment dose, i developed salivary stones. i used the sour candy and sour lemonade as instructed when i received my RAI. i drank lots of water. when i got my first salivary stone, i went to my dentist first- hoping it was a dental issue. he told me he thought that it was a salivary stone, and made an appointment for me with an ENT ( ear, nose and throat) physician. the ENT confirmed the diagnosis and prescribed warm compresses, a little massage, sour lemonade or candy, drinking lots of water, and he told me that i could take ibuprofen occasionally for the pain and inflammation. i have had trouble with salivary stones over the past 8 years. it is not a constant issue, and when the salivary stones occur, i use the self care issues stated above, and they usually resolve. lately, though, i have had some trouble with a little swelling in my neck under my chin. i have the name of a very good ENT surgeon that i will probably make an appointment with if this continues.
in some of my previous blogs, i have shared the statistic that if you have had thyroid cancer, you have about a 33% increase in risk of having another second primary cancer. and there is an increased risk of having breast cancer if one has had thyroid cancer. interestingly enough, if one has had breast cancer first, the risk of having thyroid cancer is also higher . some cancers that have been POSSIBLY associated with larger doses of RAI include leukemia, lymphoma, colon or bladder cancer.
there are so many factors to consider, when it comes to making a decision to have or not have an RAI treatment dose. one must consider the severity of thyroid cancer, for one thing. it is not the" good cancer" that some people, even health professionals, like to say. thyroid cancer changes your life forever. constant monitoring, searching for the perfect, ha, thyroid hormone replacement medication(s), dealing with the physical symptoms of being hypothyroid in the extreme, just to name a few issues. and people can possibly die from thyroid cancer. there is a very good chance of survival ( a good prognosis) if treatment is successful and there is an early diagnosis. the type of thyroid cancer, yes there are more than one kind- there are about five to be precise, also plays an important part in survival. thankfully, the most deadly forms of thyroid cancer, especially anaplastic, are very rare.( only 1 to 2 % of all thyroid cancers are anaplastic )
treatment of thyroid cancer, including the RAI treatment dose, is an individual decision. i used myself as an example, but the treatment i chose might not work for anyone else. there needs to be a good relationship between a thyroid cancer patient and the radiologist, or oncologist, concerning the question of is RAI necessary, and if so, what dose ? every patient should do all of the research possible, from reputable websites and books, and along with a physician they trust, come to a decision regarding treatment.
i have been asked several times if i would have done anything different regarding the RAI. my answer is somewhat mixed. i can honestly say that i WOULD have the RAI treatment again. my thyroglobulin and thyroglobulin antibodies remained high for three and a half years after my surgery and treatment with the RAI. i honestly believe that i might have had a recurrence had i not chosen to have the RAI as recommended by my radiologist and endocrinologist. what i might have done, perhaps, was to lobby for a lower dose- a little closer to the 100 millicuries. it might have been enough for me, but i try not to dwell on this. everyone makes their best informed decision, and then you just have to move on, so to speak.
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