Cancer Scare(ier)

Two years ago when I was getting multiple biopsies to try to ascertain whether or not I had cancer in my neck, I wasn't that fussed about it. Either I did or I didn't, and if I did, then it was a simple matter of removing it surgically and maybe having some targeted iodine radiation if it looked like it had spread.

I was confident in my care team and just didn't think about it too much.

About a year after my surgery, my endocrinologist ordered a follow-up DEXA scan (to make sure my post-surgery efforts were indeed regrowing bone) and a neck ultrasound (to make sure everything was out). I told her that I simply could not afford imaging since we lost our health insurance. She understood.

I spoke with her for the second time since my surgery this week, and she said she was aware that I was unable to get imaging, but that there is also one lab that she's ordered twice and that I have not gotten since my thyroid was removed two years ago.

The reason I haven't had this test done is semi-complicated. She is sending lab requests to Quest but because I don't have insurance and instead pay out of pocket for my labs, I actually have to use a third party company (Ulta Labs). I go to their site, find the tests she wants me to have done, and buy them myself so that by the time I show up for the blood draw (Quest only charges Ulta $12 for this, and I can't see how they stay afloat!), everything's already paid for.

The issue here is two-fold: 1) The tests on the website aren't always called exactly what the doctor calls them. 2) Me. I'm the other problem. I'm not a medical professional so I'm trying to read the description of the tests and match them as closely as possible to what she wants. Stuff like a CBC with differential or a lipid panel is pretty straightforward. But is free T4 different than T4? I... don't know the answer to that and it seems like I should be an expert by now!

So... I haven't had a thyroglobulin test since my surgery. I've had several thyroglobulin antibody tests, and those have been negative (which is great; I shouldn't have Hashimoto's if I don't have a thyroid!). I thought that those tests meant we were in the clear. But no. She said neck ultrasound and thyroglobulin levels are how she makes sure we don't have a recurrence of cancer.

I finally understood and paid for the test she's been wanting all of this time. I had it done yesterday.

I'm pretty sure I'm fine, but the thought that I could have "persistent papillary thyroid cancer" (which happens in 10-30% of papillary thyroid cancer patients) hits different than it did the first time for one single reason: We no longer have health insurance.

James got laid off 5 days before my surgery in May 2024, but our coverage extended into August. It was over $60,000 and we did not pay a penny because we'd already hit our deductible for the year.

If I required further surgery and likely follow-up iodine radiation, I'm not sure what we'd do. It would be even more expensive. It would be a bankrupting-level expense.

Today at our library group, my friend pointed out that of the 48 countries represented at the World Cup, the United States is the only country that does not have universal healthcare. 

For me, the fear associated with finding out "it's back" isn't for my health. It's still a very survivable cancer. But it is how our lives would change when we were personally responsible for such an astronomical sum, especially adding in the nuclear imaging and all of the other pre-surgical stuff I had done before.

Fortunately, my lab results came back today and my thyroglobulin level is .1 which is practically zero; it will likely be 0 in another year or so. This is really good, especially since I'm no longer on a suppressing level of synthetic thyroid hormone (which I was for a year to try to prevent any residual tissue from growing).

Additionally, my surgeon is someone who has done tens of thousands of parathyroid/thyroid surgeries and I trust her completely. She took out a few lymph nodes for testing, and neither they nor my errant parathyroid were cancerous; it was just the thyroid. She said she thinks the inflammation from Hashimoto's almost made a little "wrapper" that kept the cancer isolated.

I've been fortunate. 

But it makes me mad that we're expected to rely on fortune, luck, the grace of any god, or our bootstraps to maintain our health. 

Elon Musk has just become the world's first trillionaire. No one should accumulate that much money. Especially when, if he just paid a fair share in taxes, we could absolutely use some of HIS fortune to improve the lives of hundreds of thousands of estadounidenses (I wish we had an English word for this). 

I guess keep your fingers (and toes) crossed for me that it doesn't come back or that it holds out until I qualify for Medicare in 12 years! And that Medicare is still around. Also Social Security. And please vote for a candidate who aligns with your wellbeing in the next election. I mean you, non-oligarch-level-rich person. Thanks.