Friday, March 17, 2017

After thyroid cancer- long term monitoring, testing and aftercare. i could not think of a song for this, but perhaps " the long and winding road" by the beatles would have been a good choice...

i have seen so many different "after thyroid cancer surgery" plans, that i am sure the only thing that most people can agree on is that nearly every one's plan is different. however, there are some basic tests and monitoring schedules that should be used, i think. before i discuss these, let me say that the tests and monitoring schedules,as well as the dosing of thyroid hormone replacement medication,   depend somewhat on the stage and risk level that have been used to diagnose the patient. i was diagnosed as stage III, moderate risk. if you go to the thyca website, you can see just what the staging and risk factors mean. your doctor should have told you the stage and risk factor of your thyroid cancer at some point in your treatment. while i detest the words "thyroid cancer is the good cancer ", it usually has a good prognosis  when there is early detection and treatment.

after your treatment for thyroid cancer, which usually includes  surgery, RAI ingestion, external radiation( in some cases), and sometimes traditional chemotherapy( worse case scenario- and i do not personally know of anyone who has had to have this, thankfully), you will be placed on thyroid hormone medication. this is the most important part of the aftercare, in my opinion. not only does the dose of thyroid hormone affect the quality of life in people who have had thyroid cancer, but as i have said before, thyroid cancer patients must be monitored for their lifetimes. a recurrence can happen anytime - even years after diagnosis.

so, let's talk about thyroid medication dosing. there are several reasons that this is important. it is extremely important to keep the TSH at a level to suppress the possible stimulation of thyroglobulin. just as a reminder, only thyroid cells produce thyroglobulin. if you do not have a thyroid gland in your body, and you test positive for the presence of thyroglobulin( this should be part of your blood work test), that means that you have, most likely, thyroid cancer cells somewhere else in your body. unfortunately, there is also another factor that adds to the excitement, and that is that some people ( me included) produce thyroglobulin antibodies. this makes the test for thyroglobulin rather difficult to interpret. in my case, i tested positive for the thyroglobulin( TG) the first year, as well as the antibodies. for the next two and a half years, i tested positive for just the antibodies. my physician could not explain the " why" to me, and it was very stressful. after a little over three years, my TG levels went down to what is considered normal, and my antibodies went away. my physician told me that sometimes it just takes a while for the RAI to work. maybe my immune system got it under control on it's own? during this time, my physician kept my TSH essentially zero. the purpose is that by keeping the TSH zero, you are not stimulating those thyroid cancer cells to create mayhem somewhere else in your body.

i have had my TSH at near zero for almost 7 years now. this could be considered aggressive treatment, i guess you could say, but both my doctor and i agreed- given my stage and risk - that it was the best thing for me . this is where the individual plan comes in. i feel less anxious with an extremely low TSH, but it might not be ideal for someone with , say stage I or II with a low risk factor. having a low TSH is not without risks. a patient could develop heart arrhythmia's, or osteoporosis. i have had several bone density tests to check for osteoporosis, and to this date, i do not have that. i also do not have any arrhythmia's. but these are two conditions that i am monitored for fairly frequently.

TSH is only one blood test to be concerned about. thyroid cancer patients should have T3 and T4 , TG and if appropriate, TG antibodies tests done as well. a physical neck check to check for lymph node enlargement is important. neck ultrasound checks for any disease in the neck, i call it checking for "goblins". there is a wildly variance in the timing of these ultrasounds. my physician has ordered it for me twice yearly for the past almost 7 years. some patients get it once yearly, and some not at all (!). again, this will depend on what the patient and her/his physician  decide on. i am comfortable with twice yearly ultrasounds. they are painless, do not involve harmful radiation, and frankly give me peace of mind. since it has been almost 7 years, my physician and i are considering reducing my ultrasounds to once yearly. i am not quite ready for that, though.

it is important that a patient has a good relationship with her/his doctor. compromise is essential. i am very fortunate to have a wonderful physician who listens to how i am feeling, and does not just go by my blood work numbers. at my last visit, for example, i talked with my doctor about wanting to try some naturally derived thyroid hormone. i had been on some synthetic T4 and synthetic T3 for some time, and i was not feeling well. i was having a lot of  tiredness- especially in the late afternoon, and other hypo symptoms. she agreed and switched me to Nature-throid, which is a naturally derived, hypoallergenic thyroid hormone. it contains both T4 and T3. i feel substantially better on this. i called her office last week, and asked her if we could go up on the dose. while, i was feeling better overall, i was still not feeling quite the way i wanted to. now this was after being on the dose for 3 months. it takes approximately 2 weeks for a new drug/dose to make a difference. at least this has been the case for me. some people notice a difference after just a few days. that is where the "individual plan" comes in again.

so to wrap things up, monitoring is as follows ( this is according to the thyca website- your plan may differ, of course)

1. physical neck check: every three to six months for the first two years, and at least once a year thereafter.

2. blood tests- thyca did not give a rule of thumb for this. i have blood work done anywhere from two to four times a year. this includes the above mentioned tests ( TSH, TG, TGA,T3,T4,etc). i have blood work done and an office visit, along with ultrasound twice yearly. i have additional blood work done when i change medications or dose. you might also get additional blood work done if your overall health changes. my advice is to find a good phlebotomist -you  are certainly going to need one!

3. ultrasound tests- thyca also did not give a recommended schedule for this. like i said, i have one twice yearly, when i have my office visit and blood work tests done. i may go to just yearly on this, but so far twice yearly is working out for me. as i mentioned, it does not expose the patient to radiation, is not painful, and is just another way to monitor a possible recurrence.

4. RAI whole body scans. i had one immediately after my surgery, and one about a year later. i have not had to repeat this test. thyca does not make any recommendations about the frequency of this test. but i imagine that if there is a recurrence, this would be mandatory. again, this is something that the patient and their physician will discuss.

5. chest x-ray- i had one of these after my surgery, and before my RAI treatment. the radiologist who ordered the test said that thyroid cancer, when it spreads, goes to the lungs and bones. my lungs were clear, and i have not had to repeat this test. again, this would be up to the patient and their care plan.

6. CT scans- while i had one of these with contrast dye about four months after my breast cancer, it is not regularly used in thyroid cancer, but can be. if you have this, you will not get the contrast dye because it is high in iodine, and should you have cancer, it could delay the RAI treatment.

7. MRI and PET scans are sometimes done. i probably was a candidate for one. but upon talking to my physician, we both agreed that it was not the best option for me, even though my TG and TGA were elevated. it turns out, that was a good decision. sometimes you just have to make your best guess and go with it. i should say your informed best guess. 

testing is stressful! but in my opinion it is important. my surgeon told me that my thyroid cancer had been there for" quite some time". it would have been nice to have caught it earlier, but of course i am thankful that i was not in stage IV or that i had a more aggressive type of thyroid cancer. coming up with a treatment and monitoring plan for each individual patient is important. this should be a plan that is acceptable to the patient and their physician. compromise and informed decisions can make all the difference in prognosis and quality of life.

i hope that my blog provided some useful information. but i know that it was certainly a dry blog, so because of that, and in honor of st. Patrick's day, and not to forget the fact that i love corny jokes, here are a few for you...

" What do you get when you cross poison ivy with a four leaf clover?  A rash of good luck."

" Why can't you borrow money from a leprechaun? Because they are always a little short."

" I went out drinking on St. Patricks day, so i took a bus home. this may not be a big deal to you, but i had never driven a bus before."

" Why don't you iron a 4 leaf clover? because you do not want to press you luck."

i will end this blog on that thought...

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