I've been lucky. In 2002, at the age of 24, I had a cold and went to the doctor. The PA I saw noticed a lump in my neck. I was lucky this PA was attentive enough to notice the lump. I was lucky to have good health insurance and access to a world-class hospital. I was lucky that the type of cancer I have (papillary thyroid cancer) is one of the least aggressive and most treatable varieties.
I didn't know it was cancer until I woke up from the surgery where they removed my thyroid gland and the small blob of cancer cells attached to it. The worst part wasn't the surgery, nor the radioactive iodine treatment that kills off most of the leftover cells (thyroid cancer cells, like thyroid cells, usually take up any iodine in your system, which makes them very easy to target). The hardest part was the period before the treatment where, sans thyroid gland and the metabolism-controlling hormone it produced, my metabolism began to shut down. But being incredibly tired for a couple of weeks is getting off easy when it comes to cancer. I've been lucky.
Since then, with a doctor, I've been regularly monitoring my thyroglobulin levels (a strong indicator of thyroid cancer recurrence) and every couple of years I've had ultrasounds & radioactive iodine scans to check for any changes. A year ago, my radioactive iodine scan came up clean. After 10 years, my doctor said, likelihood of recurrence is significantly reduced. I've been lucky, but sometimes your odds improve and you still lose.
A few weeks ago, after scheduling a long-overdue appointment for a physical, I noticed a new lump in my neck. From the physical exam, I was referred to an ENT doctor, who ordered a CT scan. When that was inconclusive, he stuck a needle in my neck to suck out some cells. Last Friday, I got the results. The 8mm x 8mm x 4mm lump in my neck is thyroid papillary cancer. It's back.
Before I know what my options are, I need still more tests. They drew blood to compare my thyroglobulin levels with those from my last blood draw. Tomorrow morning, I'll have an ultrasound to compare to the ultrasound from a year ago. These comparisons determine what to test next.
If there are detectable changes from last year, it may means the cancer is newly active and the course will be a new radioactive iodine scan to determine the extent of the growth of the cancer. These results will then dictate treatment options, which would likely include radioactive iodine treatment and possibly surgery.
If there are no detectable changes from last year (which seems like the more likely scenario) it probably means the remaining cancer cells do not uptake radioactive iodine (20% of thyroid cancer tumors fall into this category) and are invisible to the radioactive iodine scans (and resistant to radioactive iodine treatment). This means the cells have probably been growing slowly all along. In this case, the doctor is likely to order a PET scan to try to identify the extent of the cancer's growth & spread (though it may fail to produce useful visual results). From there, the decision may be to do nothing or surgery.
Neither result is particularly desirable. If things have changed quickly, it could mean the cancer is more aggressive (which is bad) but can be controlled by radioactive iodine treatments (which is good, up to a point). If things haven't changed, it means the biggest gun in this fight (radioactive iodine) is useless (which is bad), but it is growing very slowly (which is good, up to a point). The most beneficial thing to do may be to do nothing but watch it grow and only attempt (risky, surgical) intervention if the growth ever becomes problematic.
The hardest thing so far has been dealing with the anxiety that comes with uncertainty. It will still probably be a few weeks before the tests are over and my doctors and I decide on a treatment plan. This post is one effort to help me deal with that anxiety. But I also have something to ask of you, dear reader.
The easiest way to avoid feeling constantly anxious is to control when I think about the uncertain future. What I don't want is continual reminders. So some do's and don't's, please:
... panic. Always good advice and I'll probably be fine for quite a long time. And so will you.
Email, text, call, tweet, post to my Facebook wall, etc. about how you are thinking about me/rooting for me/praying for me/wondering how I'm doing/etc., send me flowers, get-well-soon cards, etc. These are anxiety bombs. If you want to know, check this blog, check my Facebook/twitter status, and if it isn't there, I probably don't want to talk about it. I definitely don't need to be reminded.
Comment freely on the Facebook thread I post this to (since I can control whether & when I pay attention to it). Update: Here is the Facebook thread
Email, text, call, tweet, post to my Facebook wall, etc. to invite me to spend time with you, share some news you think I'll appreciate, tell me how you are doing or what you are up to--you know, like you normally would.
I'll keep posting updates here when I have them and am ready to share, and will tweet & post to Facebook when they appear.