Known Unknowns.
I finally got my endocrinologist on the phone to discuss the results. I have little to report. He says either the "wait & see" course or the "surgery & treatment" course are reasonable, but recommends we "wait & see." It makes sense, but it isn't very satisfying. There are a lot of things we just don't know.
He thinks because my thyroglobulin levels have been slightly elevated but stable that cancer has been present for awhile but not growing (or growing very slowly). Or it could be new growth, if minimal. We don't know.
Because nothing appeared on the last radioactive iodine scan, there isn't a very reliable way to detect the extent of any spread (if any). Maybe it is in that one place; maybe more. We don't know.
We could do surgery to remove what we can find and follow up with a radioactive iodine treatment. Surgery (especially on the site of a previous procedure) has inherent risks. Will it minimize any chance of further recurrence or growth? We don't know.
So we don't really know how much cancer is present, how long it has been present, how fast it is growing, how likely it is to continue to grow or spread nor whether surgery & further treatment would provide any benefit at all. So we do surgery anyway, and take the risks now. Or we wait & see.
Hack & Slash or Wait & See
My endocrinologist called when I was in a meeting. His message confirms that the biopsy came back benign. Also, my thyroglobulin results came back and are stable (i.e., not signaling any increased thyroid cancer activity). So, either the small tumor in my neck has been for a long time or it is new. He recommends monitoring it for the next six months. Alternatively, I can have surgery, though the benefit from the surgery may not outweigh the risks of surgery. I am meeting next Wednesday with a neck surgeon to get his opinion.
News of Indeterminate Value
After yesterday's biopsy procedure, I can't say I have good news. Nor bad news. So I'll just say I have news.
Before the news, I will say I found the ultrasound-guided biopsy procedure fascinating. The procedure consists of a radiologist zeroing in on areas of interest and a pathologist using the ultrasound image to guide the biopsy needle into the area of interest while avoiding important things (like arteries). My favorite part was listening to the candid discussion between the doctors. Most tests involve laying quietly on a table, staring at a drop-ceiling (or piece of beige medical equipement) accompanied by a soundtrack of whirrs, beeps and clicks. Listening to active discussion about what was seen & done was a nice change of pace. I especially enjoyed the sways of conversation that went from extremely technical ("Here's the {latin word} {science-y word}.") to extremely not-technical ("Oh, and then there is that thing."). Now, to the news.
My test order asked for four areas of concern found on the earlier ultrasound to be tested; one anomaly and three enlarged lymph nodes. At two-to-three needles per area, I was expecting 12 needles.
The radiologist pretty quickly ruled one of the four areas of concern was just a piece of muscle (which I'm guessing is the same piece of muscle that caused the tech to call in the radiologist during last year's ultrasound; she came to the same conclusion). The muscles on either side don't "match" (which can be a sign for concern) but the radiologist said that's normal, especially around the area of a surgical site. Three fewer needles.
The radiologist took a careful look at the three lymph nodes. While he said they looked a bit "chunky" (i.e., larger than average) their shape did not look like they were growing due to cancer. Also, one of the three had a "highlight" which he explained indicates the presence of a piece of anatomy that is usually attacked and killed by cancer, when present. Ultimately, they decided to just test two lymph nodes, one on either side of my neck. Three fewer needles.
The procedure is done without anesthesia. The pathologist said that the needles hurt about as much as the needles they use to take blood. This is true if, when they take your blood, they dig the needle in a couple of inches and then wiggle it up and down rapidly a few dozen times before pulling it out again. In other words, this is a lie. That said, it was only a little worse than a tattoo needle in the forearm and over much less time.
The pathologist took a quick look at some of the samples immediately after the procedure. She said her first look suggested that there were no cancer cells in the lymph nodes and, while she needed to do further tests, usually they jump right out if they are present. She suggested that if this were the case, they'd want to re-evaluate the slides taken from the original lump I found in my neck.
I could be wrong, but I think it is unlikely that the original pathology results were incorrect--so I'm not getting my hopes up that the original diagnosis was wrong. More likely (from what I gather), this puts me back where I expected to be before the ultrasound, which is one small tumor in the lymph node in my neck, that is probably growing very slowly and possibly one that does not take up iodine (i.e., it has been there for years). This also means near-future surgery is less likely. In any case, I'm hoping we can get out of the land of "maybes" soon. The final pathology results should be ready tomorrow. We'll see what's next.
Ultrasound. Surgery.
My endocrinologist called with ultrasound results. Somewhat surprisingly, it shows what appears to be growth at multiple lymph nodes on both sides of my neck that did not appear last year. We are still waiting for thyroglobulin levels, but we expect this result to also signal growth of cancer. After consulting my otolaryngologist (ENT doctor), he recommends a biopsy of the other visible lymph nodes to confirm they are also cancer. That procedure will be some time next Tuesday.
Assuming the results return as expected, the likely course of action will be surgery to remove the visible lymph nodes and radioactive iodine treatment post-surgery to kill off any microscopic cells. Surgery in the neck has risks (lots of really important stuff packed tightly together in a small space), especially since the surgery will be in part on the former surgical site of my original thyroidectomy (i.e., uncharted territory). One of the bigger risks is nerve damage that can affect the vocal chords; I'm glad I'm not a singer.
Since this growth seems to be largely new, the good news is radioactive iodine will likely still work well as a treatment. Being radioactive, it has risks (e.g., too much exposure can trigger other kinds of cancer), but it is otherwise side-effect free and usually very effective.
Cancer. Again.
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:
DON'T
... 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.
DO
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.
Obtvse, if not Svbtle
I discovered Svbtle via Obtvse, which is backwards, but I'll get to that. Lead by Dustin Curtis:
Svbtle is designed from a philosophy that focuses first and foremost on writing and the curation of ideas, and not on social features or personalization
Currently, Svbtle is limited to a very short list of vetted writers and aspires to become a place for well-written, well-edited, minimalist blogs. Their early lineup may be interesting if you're a lot like me (a web tech, probably male, with an interest in web culture, design and entrepreneurship). Predictable homogeneity aside, I appreciate the spirit of this effort to raise the bar on quality of writing and curation and to strip away the clutter for a more thoughtful, considerate reading & writing experience.
Lately, I've been feeling unsatisfied with the constraints and incentives of the online "social" ecosystems with which I participate. I miss the the honest-to-goodness article sharing of Google Reader's amputated "social" features. I like the experience of sharing a link on Facebook, but feel like I'm often imposing on different, non-overlapping audiences. I want to spend less time immersed in the cacophonies of Twitter & Facebook. I want a place to share a thought longer than 3 sentences.
Today AH posted that she might give up on her blog. I gave up on my own, much less interesting endeavor, long ago. But I think it is time to try again.
I'm not interested in further contributions to existing attention machines, but I hate having to be a part-time sysadmin just to keep my blog running. Obtvse, inspired by Svbtle and designed to be easily deployed on Heroku, balances this problem neatly. Heroku takes care of low-level systems drudgery and makes code deployment easy. As a relatively simple, open-source Rails app, I am right at home managing the code. This is definitely not for everybody, but a nice fit for me.