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Cancer Family & Friends Health

Cancer Recurrence Tests

I am being tested this week for any traces of thyroid cancer that may be remaining, or for a recurrence.  I’ve had to put this test off for 6 months, so I’m very glad I’m doing it now, but with any type of cancer test- it’s a little scary too. 

I wasn’t sure what to expect or really what the process was while I was scheduling it.  The nurse at my endocrinologist kept telling me it was a week long process. I am finding out as I go along.  I wanted to share the process for others who will be facing the same test.

On the first two days, Monday and today, I had an injection of the drug, Thyrogen at 8 in the morning.  Thyrogen is used to test the blood for a hormone called thyroglobulin (Tg), which can indicate cancer.  Before Thyrogen, to test for  Tg levels, a patient would have to stop taking any thyroid medication such as Synthroid for six weeks, and become hypothyroid.  I was hypothyroid for almost thirteen weeks after my surgery, and it was one of the most difficult times in my life.  Needless to say, I’m very happy I was able to have Thyrogen.

The shots themselves weren’t bad.  Just more inconvenient than anything.  The nurse I was scheduled with on Monday was 3o minutes late, and I had a tight schedule that morning. I started thinking it was a bad sign, and worries crept in.  I forced myself to think positive thoughts.  The injections were given to me below the hip, pretty much in my gluteal muscles.  I had Cole with me on Monday, and he thought it was very funny Mom got a shot there. 

The rest of the day on Monday, I felt great. I felt like I normally do.  With Daylight Savings having just started, it was light out when I got home from work with the boys, and I ran a fast one mile.  A few hours after the shot on Tuesday, I started feeling sick.  I was very nauseous, and I had a bad headache.  I felt extremely tired too.  The nausea came and went.  I fortunately was off of work for the day so I was able to rest and take it easier. 

On Wednesday I have to take a dose of radio active iodine in preparation for the full body scan on Thursday.  The dose is very small and there are no restrictions on being around other people or children after I take the dose.  The letter the nuclear medicine department sent me said the radiation dose I’ll be taking is less than what is in a standard x-ray.  I am optimistic I won’t have any side effects.  I have a 15 minute appointment with the doctor, take the pill at the nuclear medicine department, and then drive back to work. 

On Thursday in the afternoon, I have a full body scan.  This is where they will be able to see any “hot” spots, or thyroid cells in my body which can indicate cancer.  The entire appointment is about 45 minutes, but I don’t like the scans.  I have always felt claustrophobic in the machine, and I hate sitting there waiting for it.  So this is the day I’m dreading the most in the process.  My good friend, Amy, is pretty sure she will be able to come with me, and I’ll be very grateful for her presence. 

On Friday morning, I have to have blood drawn, so they can do blood work. The nurse reminded me today how important this step is. She said she has patients all the time that do the entire week, but then don’t have their blood drawn, and she says it is a complete waste.  They won’t have accurate results without the blood work. 

After all of this, I have to wait until next week for the results.  I know I will be thinking of all the “what if’s” during this time, but I am going to try really hard to think of all the positives- like the type of thyroid cancer I had, has about a 3% recurrence rate.  I still feel better physically than I ever have in my life, have never had to have a Synthroid medication adjustment, and the last test I had the Tg level was undetectable.  The odds are definitely in my favor that I am fine, and these tests will confirm that. 

Please think good thoughts for me during the next week, as I do the same for myself.  If anyone wants to add their experience with their thyroid recurrence tests, feel free to do so in the comments.  I’d be interested in hearing how it went for others.

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Cancer Health

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.