Guest Blog: WIRED’s Nick Thompson on Thyroid Cancer & Recovery
Nick Thompson, editor-in-chief of WIRED, shares his story.
In 2005, at the age of 30, Nicholas Thompson, the editor-in-chief of WIRED overcame thyroid cancer. He generously shared some of his experiences in a candid interview, as well as offering this vivid journal account, written three weeks after the experience. Though everyone is unique and although the thyroid treatment landscape has changed since 2005, this glimpse into Nick’s story will hopefully offer some relatable or useful insights and information to those who need it.
I first learned that I might have a problem in November of 2005 when my GP found a lump on my throat during a normal physical that I had to undergo to get a referral to see a knee doctor. The lump wasn't something I could see, or even feel when he pointed it out. But he told me it might be something bad and that I ought to have it examined.
The first step was to go through a sonogram to determine if it was a cyst or a nodule. I was hoping it would be a cyst, which are easy to deal with, but it turned out to be a nodule. Two weeks later, I got a needle biopsy of the nodule. This step consisted of a doctor poking a long needle into the lump, collecting a tissue sample, and then disappearing for about 15 minutes to examine it. (The poking itself was painless, though I've heard from another patient that it can hurt.) She came back and said that it looked pretty good—she had found collagen, which is present mainly in benign nodules. But she wasn't certain she had gotten a good enough sample, so she decided to poke me again. She came back again in 15 minutes saying that there was still collagen (good news) but also some atypical cells (bad news). So they needed to do further analysis at a laboratory.
In the thorough analysis, the lab found some atypical follicular cells with nuclear grooves. Since I'm a young man, and young men usually don't get nodules unless there's carcinoma, the thyroid specialist I was working with strongly recommended that I have the nodule removed with surgery. He would take out the side of the thyroid gland on which the nodule sat, as well as the center region of the thyroid, called the isthmus, since it appeared that a bit of the thyroid was attached there. While I was in the operating room, he would do a quick analysis of what he'd taken out—a process called examining a frozen section—and make a judgment call about whether what I had was cancerous or not. If he saw obvious cancer, he'd take the whole gland out when I was on the table. If it was inconclusive, he'd sew me back up, we'd send the sample to the lab and wait to hear. I said that sounded reasonable.
The surgery was pretty easy. They put me under general anesthesia, and it took about three hours. On the recommendation of a friend, I specifically asked the surgeon as we headed to the operating room whether he would be doing the surgery. I was told that this was a good way to ensure that the experienced surgeon, and not one of his residents, actually did the operation. I'm glad of this, particularly since I know of one person who was operated on by a resident and got a nasty, crooked scar. (Another reason to make sure the experienced surgeon does the job is that there's a fair risk of damage to the vocal cords in the process.) The one thing I regretted not doing was that I didn't hydrate well or eat particularly healthily in the days running up to the surgery. Not surprisingly, surgery to the neck makes it really hard to swallow, so it would have been nice to have more good stuff in my system in the first day when I was coming to in the hospital.
When I came to, the doctor told me it had all gone smoothly and that he thought that I was cancer free and would be able to keep the remaining half of my thyroid. Half a thyroid usually produces enough hormone for the body that one doesn't need to take any synthetic hormones to regulate metabolism. He had stitched up my throat nicely and, though I was nauseous from the surgery for a day or so, the hospital stay was bearable. I needed very few pain killers and felt OK, except for the few times I vomited, which hurt the throat quite a bit. After the surgery, I was told not to exercise or do any heavy lifting, for fear that I would damage the wound, for three weeks.
A week after the operation, my surgeon called to tell me that the lab had examined the nodule and that I was cancer-free. Unfortunately, two weeks after that, he called back to say that there had been some disagreement at the lab, that they had reexamined the slide and then sent to another outside specialist to double check, and that I actually did have a follicular variant of papillary cancer, which is apparently fairly rare and difficult to read on slides. He also told me that the cancer had spread to some of the lymph nodes around the thyroid. This was a crushing blow and meant that I would need to have the rest of my thyroid taken out. Still, the wonderful thing about my kind of thyroid cancer is that it has just about a 100 percent survival rate.
I had my second surgery about six weeks after the first. The surgeon made an incision at the same place and took the rest of the gland out. Like the first surgery, this one went smoothly and took about three hours. There was no damage to the vocal cords or to the parathyroids that surround the thyroid. I had to stay in the hospital a little bit longer because they were worried about blood accumulating in the place where my thyroid had been. The operation happened on a Thursday morning and I was out on a Sunday afternoon and back at work on Tuesday.
Immediately after the surgery, I was put on a dose of synthroid of 100 mcg. This is the drug given to people to replace the thyroid hormone, and it seemed to do fine. I felt a bit dizzy and weak after the surgery, but it was hard to tell whether that was because I was still recovering from the surgery or whether it was because my body lacked thyroid hormone. After about three or four weeks, I felt as though I had a problem. I was getting dizzy frequently, particularly in the evenings, and was getting headaches. The symptoms were usually worst in the morning and in the evening. I also found myself getting cold every now and then when others were feeling fine.
Five weeks after the surgery, I went to see an endocrinologist who took a blood test. The results showed that I had a very elevated TSH level (72), suggesting that the dose of synthroid they'd given me was totally inadequate. (Another problem was that I wasn't told to take my synthroid on an empty stomach; there's some difference of opinion about whether this matters, but it seems like doing so probably helps absorption rates.) This, oddly, solved a dilemma for me.
All patients who have their thyroid removed because of cancer have to follow up the surgery by taking a dose of radioactive iodine. The best thing about thyroid cancer is that thyroid cells are the only ones in the body that absorb iodine, so they are vastly easier to kill than, say, lung cancer cells. Plus the process of killing them is much easier than with other cancers. With chemotherapy, you take a pill that goes after the cancer cells in your body. But it doesn't get them all, and it kills a lot of other stuff too. Radioactive iodine kills the cancer cells and that's about it.
Still, it's not cake. To prepare for the radioactive iodine treatment, one has to make sure that the body is craving iodine—a substance needed to create thyroid hormone. To get the cells craving iodine, one usually has to do two things: go on an extended low-iodine diet and stop taking synthroid for a couple weeks. This provokes the pituitary gland to produce a lot of TSH and gets the stomachs of the cancerous thyroid cells that have spread grumbling. It, however, can be a real grind to go on a low iodine diet for four weeks and to stop taking synthroid for as long, so doctors have started working with another treatment in which patients are just injected with TSH. Many doctors, however, don't think that this treatment has been adequately tested and the pioneer I had hoped to meet with, at Sloan Kettering, didn't have time to schedule an appointment with me for six months. Dealing with this step was stressing me out, but then, because my TSH levels were already so high because my initial dose of synthroid was so low, I was able to skip the four weeks of preparation and head straight to the radioactive iodine treatment, without having to worry about the different benefits and costs of TSH injections.
It took a few days to schedule a time to begin the radioactive iodine treatment and, during that window, I did start a low-iodine diet (lots of vegetables; no dairy; no iodinized salt; no restaurant food; no soy) and to stop taking synthroid. But, fortunately, I had a much shorter time with this than most people.
The first step in the radioactive iodine treatment process is several days of scanning the body. On the first day, I was given a very small dose of the iodine-131 isotope (2 mcu I believe) and then my body was scanned, and blood was drawn, every hour for four hours. The doctors' goal was to determine how my body responded to having the radioactive iodine in the system and how quickly it processed it. This was intended to help them determine how high a dose they should give me when time for the actual treatment. The next day, I went back for another blood test and more scanning and then was given laxatives to clean out my system and preparation for a full body scan given on the third day. When the body is scanned, the doctors want to be able to tell how much of the radioactive iodine has been taken up by the remaining thyroid cells, and they don't want their view obscured by any of the isotope taken up by stuff in the digestive tract. Taking laxatives is a drag, particularly when one is feeling really weak and hypothyroid already, and particularly since one's urine and waste are slightly radioactive and it's important to make sure there's no danger to someone you're sharing the bathroom with. This adds to the general stress of having to be really careful not to contaminate anyone else while the radioactive iodine isotope is in one's system. During these three days, I had to sleep in a different bed from my wife, use disposable silverware, and stay at arm's length from her. I also didn't ride the subway or go into the office for fear of harming anyone else.
The full body scan consists of lying on a table for three hours, with a technician adjusting your position every ten minutes or so and telling you not to move. It's boring but tolerable. The one unfortunate thing for me is that, as often happens I hear, the first scan was inconclusive. Apparently, there was too much stuff in my stomach for them to be certain that they were only seeing the radioactive iodine absorbed by the thyroid cells, and not the radioactive iodine absorbed by, say, stuff in my digestive tract. So I had to drink a lot of water and go back in the next day for pretty much the same thing. This is frustrating since my thyroid hormone levels were dropping by the day. The hormone has a half life of about 7 days so, even though I had been off synthroid for two weeks, I still had some in my body. But it dropped every day, constantly accentuating the symptoms of hypothyroidism: dizziness, cold fits, headaches, difficulty of concentration, tendon pains.
I got a second scan two days after the first one, and that one turned out to be clean: you could see my body in silhouette with a single bright spot around the thyroid. This was very good news: it meant that the cancer hadn't spread anywhere beyond the lymph nodes where it had initially been found and that there wasn't any stray thyroid tissue in my body besides the microscopic bits around where the original gland used to be. These still needed to get zapped, but with a relatively low dose (150 mcu) of radioactive iodine. The doctors reported that some patients receive up to 600 mcu, though they also reported that, until a year ago, anyone receiving more than 30 mcu in New York State up until a year ago needed full hospital quarantine. Now the rules are a bit looser.
I got the dose on Friday morning, March 30. It was just a pill, which they brought into the room in an imposing lead container, that could have passed for Tylenol. But, immediately after taking it, I sent the Geiger counter into a tizzy. After getting the dose, I bicycled home, being extra careful not to bump into anyone, and returned to my apartment, which my wife and I had carefully prepared. She stayed with friends for a week, but we still wanted to minimize any chance that I would contaminate things that could cause problems for her or anyone else at the end of my isolation. We set out plastic silverware, bought lots of fruits and vegetables since one has to stay on the low-iodine diet while going through this, and put everything I thought I would need in one room of the apartment so that I wouldn't even need to go into the other ones. We also laid out the pots and pans I would likely need, closed all the other closet doors, and took all her things out of the bathroom. I left out a special suitcase in which to put all my radioactive clothes and moved most of the houseplants into the room I wouldn't be using.
The most important thing, of course, was to be really careful in the first couple days. One interesting thing I learned while getting this dose is that, although the physical half life of Iodine-131 is 8 days, the metabolic half life in my body, which they tested during the week when I got a low dose of radioactive iodine, is about 12-16 hours. This means that if I sweat and a little bit of radioactive iodine gets on my shirt, it'll decay in half over 8 days. But the stuff inside my body went much faster because I was processing it, drinking water, and then excreting it. After 6 days, and 10 half lives, I was about 1/1000th as toxic as the moment they gave me the pill. But anything I touched on the first day was only about 1/2 as radioactive. So, for example, the clothes I wore home from the hospital likely were still slightly radioactive after one week. But the clothes I wore on the 5th day probably weren't radioactive at all.
The first couple days of the treatment and isolation were pretty awful, though some things were better than expected. The doctors had warned me to high heaven about salivary gland pain, but that wasn't a problem at all. I also didn't have any of the severe reactions that can happen. I was also worried about going stir crazy, but that wasn't so bad. I just keep reminding myself that there are lots of people who would kill to have a week where they could just hang around the apartment, doing whatever they wanted. I was able to keep myself going by continuing to work for my job from home, reading a lot, and digging through online music services looking for new stuff to listen to.
That said, there's nothing fun about the isolation. I got terribly nauseous early on. I didn't throw up, but constantly felt like I had to. One weird side effect of that was that all the food I had to put down on the first day became associated in my mind with the nausea. This was a particular problem since I was supposed to be drinking gallons of water, but, by the second day in isolation, the thought of tap water made me instinctively ill. I had to ask my wife to drop off a couple big bottles of Seltzer water so that I could at least drink them. I also asked a friend to bring by soup. (She dropped them on the steps outside the apartment and then rang my cell phone.) At least if the food comes from somewhere else, my brain allows it to go down. Combining hypothyroidism with nausea and not eating and drinking enough isn't the best idea. I felt like I had a constant, pounding hangover.
As the week progressed, things got a bit better. I could go for short walks in the nearby park with my wife, staying 10 feet away from her and other people (and fleeing to the side at the sight of pregnant women or children) and the nausea cleared up a bit. (While doing this, I had to carry around a note from my doctor explaining my treatment in case I got pulled over by a cop with a Geiger counter.) I did get progressively weaker though. I had initially found this problem because of a knee problem I had after finishing pretty high in the New York marathon. By the end of the week, I could barely walk a block without getting tired and, often, having to sit down.
Throughout the week, I kept thinking about Friday, April 7th. That was the day that I would get to go to the hospital, leave isolation, get my body scanned again, start taking synthroid again, and start eating normally again. I had visions of spending the weekend in the botanical gardens, perhaps kicking a soccer ball again, and going out to a lovely Sunday brunch.
Unfortunately, as with everything in an illness as complicated as this, it didn't quite work out that way. My wife was allowed to come home on Friday, which was fantastic. But my scan wasn't clear and I had to go back in two days later (staying on the low-iodine diet in the meantime). I also didn't start to get magically better just because I could go on synthroid again. It was almost like my body, accustomed to the abuse I had been treating it to, decided to rebel against the thing it had been craving and the Sunday after I went back on the synthroid was the worst day of all. I was profoundly dizzy and nauseous. Instead of my dream day outside, I spent it getting scanned in the hospital again and then lying on the couch, zonked and watching public television videos about African fig trees. Still, finishing the isolation was sort of like hitting the winter solstice. Even if still dark outside for most of the day, there was strong reason to believe that each day would get brighter.
Fortunately, on that Monday, I got the news that my scan was clear. The cancer was all gone and the next step would just be a check in with my doctor in six weeks to adjust my thyroid hormone levels and then a checkup in six months to make sure the cancer hasn't come back by any way. Soon after getting that news, I started to feel genuinely better. Within four or five days I was able to work a full day at work. Within two weeks, I could bicycle around and felt almost normal. I'm now nearly three weeks in and, though I still get dizzy a fair amount, my energy level is coming back to where it used to be.
- To learn more about Nick’s experiences with thyroid surgery read our Q&A with Nick
- Read Nick’s poignant and inspirational essay about running his fastest marathons to date in his forties. Among other profound topics, the essay demonstrates how far Nick’s recovery has come since 2005, read his wonderful
Learn more about some of the concepts discussed in this piece.
- Thyroid Cancer
- Thyroid Nodules
- Radioactive Iodine
- Thyroid Surgery
- Thyroid Function Tests
- Thyroid Cancer: My Story