Time for Thyroid Cancer Recurrence Tests

It’s been over year since I’ve had to write a blog post about my health.  I say “had to” meaning there was something I had to take care of in regards to my health cancer.  I’ve been very fortunate I haven’t had any issues or problems.

I was supposed to be tested for cancer recurrence this past fall, but because of insurance issues, I had to postpone it.  I was actually relieved I could put it off.  But, it was always there in the back of my mind- I couldn’t delay it forever.  With the New Year, I made myself call and reschedule the tests.

It’s been a while since I met with my endocrinologist to discuss tests procedures in detail.  But they entail injections of thyrogen, over a few days,  to raise my thyroid stimulating hormone (TSH) levels to see if I have remaining or a recurrence of thyroid cancer cells. There is also blood work, and a full body scan after the week is over.  In reading more about this, some patients have to have some radioactive iodine (RAI) in order for the scan to be read,  but I haven’t verified with my doctor that will be the case for me.

Yesterday, I received a call from the drug company my doctor ordered thyrogen through.  They told me the thyrogen is over $2,000 with my insurance, and they said I had to pay for it out of pocket before they would ship it to my doctor.  I was expecting it to be expensive, but I wasn’t prepared for that price tag.  My only other “option” would be to go off my thyroid medication for several weeks and go into the hypothyroidism state again.  If you know about my cancer experience, being hypothroid was one of the worse experiences.  I felt like I was 100 years old, and I could barely function.  Obviously, that is not a realistic option.

Last night I was trying to figure things out, and not freak out about the cost. I hadn’t had time to call my insurance yesterday, but I did today and was on hold for almost an hour before I had to hang up, with other things I had to get to.  So needless to say, it’s been stressful thinking about these tests.  I don’t like thinking about how to pay for medicine I wish I didn’t need, for cancer tests, I wish I didn’t have to take. 

This afternoon I received a call from the drug company and they apologized.  They told me they had given me wrong information yesterday, and my insurance is paying for the thyrogen, and it had been shipped to my doctor.  That was good news, but I didn’t feel very happy about still having to take cancer tests- now I just don’t have to pay as much for them.  I still need to follow up with my insurance to find out if I am going to be billed for the thyrogen and how much.  In case others are struggling with this issue, Patient Access Network, was brought to my attention, and they help people cover the cost of co-payments for their cancer and chronic disease medications. 

Now I’ve switched  from thinking about finances to the tests.  The rate of thyroid cancer recurrences is very low.  It is around 3% for the type I had.  I’m told if I did have a recurrence, I would have to take another dose of RAI, and go from there.  The logical part of this tells me I’m fine, and there is nothing to worry about.  But if I am honest, I’m scared.  I don’t like thinking about having cancer again.  In a way, it feels almost worse than when I was first diagnosed, because I didn’t know what having cancer entailed.  Now I do. 

I know like the first time, it’s a battle of sorts-trying to balance the fears and uncertainty between the statistics and odds. I only had a one in ten chance of having thyroid cancer in the first place and I was that “one.”  So as much as I hate thinking about these tests, and what they entail, the only way to find out for sure is to take them.

So ready or not, happy or not, thyroid cancer recurrence tests, here I come.