I had thyroid surgery 3 and a half years ago. When my medical ordeal first began, I found myself searching online for information and not finding much in the way of personal stories. Hopefully somebody else who’s going through a similar situation will find this post and take comfort.
I had a 9mm x 7 mm x 8mm thyroid nodule that was discovered by my doctor during a routine annual exam in August of 2006. She suggested that I get an ultrasound just to be on the safe side. To the right is one of the ultrasound images. I have no idea how to interpret it, but I like the heatmap design!
The ultrasound didn’t show anything conclusive so an FNA was recommended for follow-up. An FNA is a fine-needle aspiration biopsy. From my research, I found that the results yielded from an FNA vary greatly based on the # of times the doctor has actually performed the procedure. I should state here that I have an irrational fear of needles, so the prospect of a large needle getting stuck into my neck repeatedly for cells was frightening, to put it lightly. But I also assumed that this mini-drama would come to a close after finishing the procedure.
Unfortunately the results were inconclusive. The ambiguity following each test was frustrating. Before we are confronted with our own personal medical problems, I think we all assume that medicine is more or less a black and white science. There must be a right and wrong, a good or bad result, something decisive. What I learned from my experience is that not only is there still a lot of grey in how a test result can be read and interpreted, but also that the recommended action can be disconcertingly different based on which doctor you’re talking to, which hospital you’re having your procedure in, and even what part of the country you live in. Here’s what my FNA result said:
Here’s what stuck out for me:
The risk of a malignant neoplasm is approximately 10-20%.
My doctor called me in the evening to tell me about my FNA results and let me know she had already called a thyroid surgeon at UCSF to get me an appointment for the following morning. This is the point where I began to worry. Having doctors hustle on your behalf is generally not a good sign. I went to the appointment alone, but I wouldn’t recommend that to others. I repeat, I would not recommend that to others. I had some silly idea of how I, a 26-year-old “adult”, should behave in this type of situation. But if I could give one piece of advice to others going through medical problems, it’s that you can and should rely on your family & friends. It’s not only comforting to have people you love with you, but it’s also practical because you’re getting a ton of information to process while your mind is seizing up with emotion already.
When I went to meet with the thyroid surgeon the following morning, he recommended that half of my thyroid be removed because it was the only way to determine whether the nodule was malignant. I was shocked because I’d assumed that at worst, I would just need to remove the nodule itself, which was quite small. The issue was that with the particular type of cells (follicular) found from the FNA, the only way to make a diagnosis was to examine the edge of the nodule and how it connected with the rest of my thyroid tissue. I tried to talk the surgeon into lowering the 20% estimate, pointing out how small the nodule was, how I wasn’t experiencing any symptoms of thyroid disease or general sickness, how young I was. Nothing would make him budge from his recommendation. Now, I want to pause and point out that if you have to have cancer, thyroid cancer is really one of the “best” cancers to get because the recovery rate is astonishingly high, something like 90-95% I think. So in that respect, I was lucky. I was also lucky because thyroid cancer grows very slowly, so I had time to do more research and talk to my smart friends and relatives in the medical field.
In searching my email, I came across this message I’d written to a thyroid Yahoo! group soon after meeting with the surgeon.
Hi, I’m new to this group and just found out I need to have half of
my thyroid removed because of a thyroid nodule found a couple months
ago. I had a FNA biopsy done and though the sample came back benign,
there is still a 20% chance that it’s malignant. I’m 26, and I feel
like it is not possible for it to actually be cancer. Has anyone
been in this situation and decided to wait and watch the nodule
instead of having the surgery? Does the surgery leave a very
noticeable scar? Thanks in advance…
I think that post just about sums up how I was feeling at the time: scared, angry, and in denial. Once I began to do research, I realized that I was fortunate to already be talking to some of the best thyroid doctors in the country at UCSF. I learned that you want to find a doctor that performs at least 50 thyroid surgeries a year. I ended up going with Dr. Duh at UCSF, and I think he performed something like 200 thyroid surgeries a year! There are serious differences in the procedure based on where you are. For example, 10 years ago, if you had thyroid surgery they would leave the wound open afterwards with a drainage tube. But research shows that the risk of infection is higher that way, so at UCSF, they just stitch you up and superglue the wound. Yes, superglue! For superficial purposes, it’s also important to have a surgeon who places the incision in your neck crease, so as you get older it becomes less and less noticeable amid all your glorious wrinkles. A less experienced surgeon also increases the risk of your vocal cords getting permanently damaged.
I deliberated whether to get the surgery or not for a couple months. On one hand, 10-20% seemed very low, and surgery seemed to present some less than desirable side effects, especially the scar I would have on the middle of my throat for the rest of my life. Yes, I obsessed over that scar. I tried to imagine how it would be to have people stare at my throat. Would I be able to feel it when I swallowed, when I touched my neck? On the other hand, if I never got the surgery, I would have to get blood tests and ultrasounds year after year to monitor my thyroid. I would always wonder if my next test or scan would be the one that showed something suspicious. I decided it was better to know than to wonder.
On January 11th, 2007, I had half my thyroid removed. What follows is an excerpted version of the email I sent to friends the following day.
Pre-Op: Got to UCSF at around 6am Thursday morning with the family and waited for my name to be called. You’re supposed to only be allowed to take 1 family member with you to the pre-op room where they put the IV in, but my dad finagled his way in with anesthesiologist status so I had both my sister and my dad with me. Once there, I had the opportunity to take off all my clothes and put on a lovely green-and-blue gown that flapped open appealingly in the back. My surgeon came by to explain what would be happening again, and mentioned that they most likely would not test the removed thyroid tissue at the time of the surgery because the cells were follicular, which would make it inconclusive. He said that in approximately 1 of 20 times though, he does order a frozen section to be tested during surgery if the tissue feels firm, because then it’s more worrisome that it’s papillary thyroid cancer. After waiting for awhile, the nurse and anesthesiologist came to talk to me and the nurse attempted to put the IV in. I say “attempted” because it was a giant, traumatic disaster. She tried on my right hand first and then my right elbow with no luck. Then the anesthesiologist took over and attempted my left hand. The vein was “blown” or “infiltrated” each time. This is when they decided they’d put me under with the mask before putting the IV in. Yes, I said, that sounds like a great idea. Unfortunately, this is when my dad decided that he would “take control” and put the IV in himself. Then a mini-Lily freakout moment occurred in which I wrestled my arm away from him with maniacal determination. I was then rolled to the operating room, had a mask put on me, took a few deep breaths, and the rest is history.
Post-Op: I woke up to people calling my name in the Post-Op room. I felt a little nauseous from the anesthesia so they put some stuff in my IV and I fell asleep again. Woke up later and was rolled into a unit with ~10 beds, each curtained off. I had asked for a private room multiple times, so I was a little confused as to how I ended up in the dorm unit. I spoke to the nurse about it, and according to Cathy, I was very intimidating in a scary, slow-speaking, drugged-out way. She says I sounded like the Godfather, which seems to me to be the ultimate compliment. 
Anyway, it was all for naught since I had to stay in the dorm the whole time.
I found out that I did happen to be the 1 out of 20 that got tested during the surgery because my surgeon was concerned with the tissue. Luckily the test came back benign or else I would have had my entire thyroid removed immediately. I still have to wait for the more in-depth test results to come back Wednesday afternoon, but I’m feeling pretty optimistic. As for the incision, it’s larger than I’d anticipated but I’m trying not to focus on it too much until the redness and swelling subside a little bit. I was told that it was fine to have soap and water on it, but to hold off on putting any scar cream or vitamin E until after I’d seen my doctor in my follow-up appointment. My voice is totally normal, so I’m really happy about that.
Anyway, the nurses were very nice and I got to eat a lot of popsicles during the night. Yum. My throat’s sore from the intubation, and my neck is obviously sore as well, but I had some Vicodin at the hospital and a fair amount more in a prescription waiting for me at Walgreen’s, so I should be a happy, happy girl for the next week.
The nodule turned out to be benign. Hooray! Aside from the blood tests every 4 months and ultrasounds once a year, my life has returned to normal very quickly. My little half thyroid did the work of a whole thyroid for about 6 months before beginning to produce less than I needed. So now I take a thyroid pill every morning and will for the rest of my life. Sure, sometimes it’s a pain to remember to take it and not eat for at least an hour afterwards, but I’m lucky because I don’t have any negative side effects from the pills.
In case you’re wondering about the scar, it healed miraculously fast. I have close friends I met a couple years after surgery who never even noticed the scar until I pointed it out months later. I didn’t do much to care for it aside from wearing scarves the first week and then trying to remember to wear Neosporin scar strips over it when I knew I would be out in the sun.
And that’s where the story ends for me, luckily. I had another thyroid ultrasound a few months ago where everything looked good so I’m cleared for another year!
Friends ask me sometimes if and how this experience changed my life. It’s hard to separate the surgery from other personal issues that were happening at the same time, but I would say that together they acted as a sort of pivot. I didn’t see my life flash before my eyes and I didn’t make any radical changes, but I think it did make me value my relationships more. You learn that your friends and family are really the most important part of your life, and while getting a salary and health insurance from your job is great, it’s not what’s going to get you through the dark times when your life gets rocked and the future is uncomfortably uncertain.
If you came across this post because you’re going through something similar, feel free to shoot me an email at lily[at]lilychiu.com with any questions or thoughts.
