Death of a Thyroid: my diagnosis and treatment for thyroid cancer
By Karen Smyers
In September of 1999, I was diagnosed with papillary carcinoma—thyroid cancer. I want to write up my story so that others can maybe learn from the details and also be reassured that this diagnosis does not mean the end of your athletic dreams.
I was grateful that within 24 hours of my diagnosis I was able to connect with a role model: A Canadian rower, Emma Robinson, who had been treated for the same thing the previous year and had gone on to set a world record 5 months later. It gave me the hope and confidence I needed that I would come through my treatment as well. Maybe my story can do the same for others.
IF you want to know what I learned without taking valuable time out of your day to read the gory details, here is the summary:
- Arm yourself with knowledge
- Tackle one thing at a time, but do it with gusto
- Stay positive—find the silver lining of your situation
- Find something you are passionate about to motivate you through the tough times, and
- Keep your perspective
I went to see my doctor in September of 1999 for bronchitis. I was training for the Hawaiian Ironman in October and wanted to get healthy fast so I could finish my final block of hard training. I mentioned as a side note that the front of my throat looked full to me—I didn’t have the V-shaped “hollow” that one should have. (As a matter of fact, I always craved a long, thin, elegant neck to no avail!). My primary care doctor thought I better get an ultrasound on my thyroid as a precaution because it did appear to be enlarged. I went ahead and got that done in the next few days just to keep him happy. I wasn’t feeling any symptoms of over or under-active thyroid so couldn’t imagine anything would be wrong. As a matter of fact, at that time I had little knowledge of what the butterfly-shaped organ in my neck even did.
The ultrasound showed several nodules on one side of the thyroid. The radiation technician actually told me in an offhand way that it meant I probably had cancer. (Thanks for the excellent bedside manner!) This was a shock to say the least. It happened to be coming after a string of other mishaps that had kept me from competing at the Ironman the previous two years. I had won the event in 1995 and finished 3rd in 1996; then I slashed my hamstring in a freak run-in with a storm window in 1997. I used the extended downtime as efficiently as possible (with some help from my husband Michael) and had my first child, daughter Jenna, in May of 1998. As I was attempting a comeback that summer, I was hit by an 18-wheeler while cycling near my home. The resulting fall knocked me out until the 1999 season. Now, as I was poised for the biggest race of the year, I was told I probably have cancer? Gosh darn it! (Real sentiment has been cleaned up to maintain a “G” rating.)
A QUICK DIVERSION
We spoke to my doctor who said we couldn’t be sure of anything until we got a biopsy. He assured me that it is a very slow-growing cancer so if I wanted to wait until after Hawaii for the biopsy it would not change my prognosis. Or I could do it sooner if I wanted to know right away. After some discussion, my husband and I decided to wait until after the race (which at this point was only four weeks away) so I could focus on one thing at a time (divide and conquer!). I managed to put the whole cancer worry in the back of my mind until after the race. I had a great return to Hawaii—I finished 2nd to Lori Bowden who had to pass me on the run and broke the marathon course record to do it. The result had me hoping the whole thing was a mistake–how could I feel that good and have cancer?
Another triathlon goal loomed large in front of me at this time: triathlon was being included in the 2000 Olympics for the first time! This was the most exciting thing that had ever happened in our sport. I had been hoping for this since 1992 when I was in the midst of a streak of 6 National Pro Titles and 2 World Championship wins. Our sport finally got the nod and though I was going to be 39-years-old and showing some battle scars, I still felt I had a great shot at making the team. But to qualify for the Olympic Trials races, I needed to have a good World Ranking. The points had been accumulating since 1997—I had my work cut out for me since I had missed the first two seasons for the hamstring mishap, pregnancy, and the truck incident. We scheduled the biopsy for early December, which gave me the opportunity to do one more race for the season, a draft-legal race in Mexico, to boost my ranking.
My bad luck was able to follow me below the border somehow and I was in a freak accident during the bike segment when a fellow competitor’s pedal came out of her crank unexpectedly while I was right behind her and we were both standing to climb a hill. She went down with no warning; I toppled over her and broke my collarbone. Gosh DANG it! (Still a G-rating but it is getting harder to maintain!)
I took the red-eye home in time to get my biopsy the next day. Luckily, I was able to go through with it after they checked that my blood would still clot despite the Advil I was popping for the collarbone pain.
The biopsy results showed that I did indeed have papillary carcinoma. Frankly, this didn’t surprise me at this point given the trend in my luck. I was referred to a top endocrinologist at Mass General Hospital, Dr. Gil Daniels, who recommended I have a total thyroidectomy because the chances were high that it would spread to the other half eventually. This way I could avoid a second surgery (in theory). I would have to take a replacement hormone the rest of my life since I would no longer have a thyroid to produce it. I had a quick scary thought that if the thyroid hormone was on the banned list of the World Anti-Doping Association, I would have to quit racing! I was relieved to find that it was not banned. My luck was turning!
I agreed with Dr. Daniel’s recommendation and pushed to get under the knife as quickly as possible since I was currently looking at 6 weeks of down time due to the broken bone. (I was well versed in combining rehabs from the successful maternity leave/hamstring surgery double). I placed a “Do Not Disturb” sign on my healing left collarbone and underwent the 5-hr surgery on December 18, 1999 by Dr. Gaz at MGH, who did an artful job of minimizing the telltale neck scar. In an ominous comment, he did mention in my post-op visit that I had a lot of “weird-looking stuff” in there and that he couldn’t get to it all. I was too busy vomiting from my hefty dose of anesthesia to question him more about that comment.
The next step was to be treated with a dose of Radioactive Iodine. This is usually a one-time dose that does an excellent job of “mopping up” all the smaller cancerous thryoid cells that might have been missed by the surgery or that had migrated to lymph nodes. The reason papillary carcinoma is usually not life-threatening is the efficacy of this RAI treatment. The thyroid is the only tissue in the body that absorbs iodine. By first starving the body of iodine by going on a special low-iodine diet, any remaining thyroid cells suck up the RAI and the radiation destroys them.
Although it is a one-time treatment, it can knock the body for a loop for a couple of reasons. First, one must go hypothyroid for 2 weeks (to purposely deplete the body of the thyroid hormone) in order to ensure a good uptake of the iodine. Going hypo- is one of the worst parts of treatment because you become tired, lethargic, gain weight, and can suffer from debilitating cramps. The best way I can describe it is always feeling like you really need a strong cup of coffee to wake up—but never getting it (pure torture as any coffee lover can attest!). The low-iodine diet can also cramp the style—among the things you have to avoid are dairy products, seafood, restaurants for the most part, foods with added salt (though adding your own non-iodized version is OK), and god forbid, chocolate. My salvation was that beer was still OK.
The second reason the RAI treatment takes a toll is that even though the thyroid is the only tissue to absorb the radiation, the rest of your body is still exposed to it while it passes through the body. The digestive system in particular can become “stunned” and not function as well for weeks afterward among other side effects.
For these reasons, I discussed the risks of waiting to do my RAI treatment until after the Olympic Trials with Dr. Daniels. The two Trials races were in April and June, which would mean delaying for an extra three months (typically you wait two months after surgery anyway). Because of the slow-growth of this particular cancer, he told me that though it was unconventional, he didn’t believe it would be too risky to wait. So as soon as the collarbone and neck scar had healed by mid-January, I threw myself into training with the ultimate in carrots enticing me—making the U.S. Olympic Team. I had a small issue of a frozen shoulder to contend with after the collarbone healed but eventually got the arm doing some semblance of a swimming stroke again.
I was put on a dose of 150 mcg of Levoxyl (levothyroxine) daily for the rest of my life. I quickly got in the habit of taking it every morning before I got out of bed. My energy level and metabolism were remarkably good from the get-go and my worries that I may feel “different” trying to train and compete while on an artificial hormone replacement soon disappeared. I must not be too sensitive to it because my doctor eventually raised my dose to 175 mcg in order to keep my TSH adequately suppressed, and I never noticed a difference.
To fast forward a few months: I did not make the Olympic team though I gave it the best shot I could. My swim never got back to the level it needed to and that is crucial in the draft-legal style of racing. There were glimmers of my former glory in that in the first Trials race at the World Cup in Sydney, Australia I had the 5th fastest run split of all the women and the fastest of the Americans. I tied for the 2nd fastest run split at the second Trials race in Dallas. But without the swim to deliver me to the right bike pack, it was too little, too late. All the same, I had a healthy perspective on the outcome (due to being a cancer-surviving mom pushing 40 I guess!)
The Olympic Trials proved to be the perfect vehicle to deliver me through the cancer ordeal. I did not dwell at all about the fact that I had cancer–I was so excited about and focused on getting back in shape for the Olympic Trials that I really didn’t have time to sulk or be scared about it. I feel fortunate that I had the opportunity to chase that dream at precisely the time I needed it (though ironically not the time that would best allow me to achieve it). What does Mick Jagger say? “You can’t always get what you want, but if you try sometime, you just might find…you get what you need.” So true.
So now that the Olympic quest was over, it was time to mop up those cancer cells. I scheduled the RAI treatment for July 6th. I started my hypo phase by tapering off my thyroid medicine and went on the low-iodine diet (goodbye cheese, Ice cream and chocolate chip cookies!). The day before the scheduled RAI, I had to go in for a “tracer dose” of RAI. This would allow the doctor to see how much thyroid tissue I had left which would in turn would help determine the dose to give me. When I arrived the next day to check in, the scan revealed I had a huge absorption rate of the radiation: 27% when they expected less than 1%. The doctor did an ultrasound revealing that I had two large lymph nodes and two smaller ones that were too big for the radiation to take care of–I would need a second surgery after all. The RAI treatment would have to wait.
Unfortunately it could not be scheduled until August. This development had me nervous and unsettled. I had thought that most of the cancerous tissue had been removed in surgery and now discover that there was a significant amount that had been hanging out while I delayed. I hoped it was not a mistake to wait. I had never meant to take a risk by delaying my treatment and did not want to be perceived as having done so (though some media had decided that fabricated angle made a better story). I took my health very seriously and would never risk it for a sport, especially with a one-year-old daughter relying on me to be around a while.
But when I didn’t make the Olympic team, I had immediately found another goal—I planned to go back to Hawaii for the Ironman in October. If I had surgery in late August and the RAI treatment afterward, it would seriously impact my preparation for the race. I knew the cancer treatment came first, but I also knew that it would help me if I continued to have goals to get me through it. I decided to do my best to train for it despite the treatment and see how I felt as race day drew nearer.
THE MUMPS STUMPS
I was allowed to go back on my thyroid meds right away since the surgery was too far away to keep up the hypo phase. To my great relief, the surgeon was able to move up my scheduled surgery to July 21st! I decided to squeeze in an Olympic-distance race the weekend before in Cleveland (with no objection from the doctor). Racing is always the best therapy for me I figured and it would help me pass the time until the surgery. I finished 3rd and though I didn’t feel great, I was happy I had done it. I spent the night in Cleveland and when I woke up the next day, I noticed a sore lump in my neck under my left ear. I talked to my husband who told me to call Dr. Daniels who didn’t seem to have an explanation. But I was due in the next day for pre-admission testing for the surgery so he figured he would see me then. As I waited for my plane home, I got more and more worried as the lump seemed to grow and get sorer. It didn’t help that the plane kept getting delayed so I spent the whole day waiting to fly out, while missing my husband and daughter. I confess, it was one of the few times I broke down in tears during my ordeal—I was scared of the unknown.
The next day the swelling was pronounced enough that I thought it was obvious to anyone that looked at me. Remarkably, the people at the registration desk at the hospital didn’t notice it so I mentioned right away that I needed to have the lump on my neck checked out. But there was a routine to follow for check-in with which no one seemed to want to interfere. By the time a doctor finally saw me and I mentioned the swollen lump, I had walked around half the hospital. The doctor felt it and I saw a startled look in his eyes. He left the room and said he would be right back. He came back with another doctor who felt my neck and nodded to the first one. The first one produced a breathing mask, told me to put it on, and then told me they were escorting me out the back door of the hospital because they thought I had the mumps! What the…?
I explained to them about the high absorption of radiation from the scan and my triathlon race just 10 days later—didn’t they think there was a connection? They only wanted me out of that hospital in case I had an infectious disease. The surgery was postponed and Dr. Daniels recommended I go see an Ear, Nose and Throat Doctor. I spent the day waiting to see him and doing tests. I called my Mom to confirm I had been vaccinated as a child. He finally sent me home with inconclusive diagnosis but told me to stay out of the public for a few days in case it was the mumps. He gave me an antibiotic and told me to massage the swollen area.
The next two days the swelling moved up to my cheek and I felt achy and tired. I missed four days of training (good thing I wasn’t on the Olympic Team!). The doctor was unable to confirm or dismiss a mumps diagnosis. The ENT eventually had me get a chest X-ray—I can’t remember what they were looking for to be honest. The swelling finally dissipated gradually over the next few days.
I had the surgery re-scheduled for August 14th. In the meantime, I was able to get in some longer training in the hopes that Hawaii was still in the cards. My heart rate was about 10 beats higher than normal during these next few weeks and I had several instances of being very shaky and bonk-y after easy workouts. I do not know what would have caused this I was back on my regular thyroid hormone at this time. My period was also delayed 10 days—I am usually as predictable as the tides so this was unusual. My best guess is that it was a side effect from the high absorption of the tracer dose.
I had the scheduled neck dissection on August 14th in a 5-hr surgery. Dr. Gaz took out 5 lymph nodes and a chain of lymph nodes from the left side that were all cancerous; the right side still appeared clean. Thankfully the anesthesiologist adjusted my dose downward after the sickness I experienced after the first surgery. I felt much better upon awakening, except for a terribly stiff neck. The pain was not at the surgical site, it was in the cervical spine. The next few days, I took extra-strength Tylenol primarily to relieve the pain from the stiff neck, not from the surgery.
I had 17 days between the surgery and the RAI treatment. I was able to walk for exercise each day for the first week and used it as a good opportunity to take Jenna for walks in the jogger. My stiff neck was still quite a problem—I began seeing my favorite PT, Dan Dyrek, to see if he could help relieve the pain.
At this point I had to go off my thyroid hormone again to start the hypothyroid phase in preparation for my upcoming RAI treatment. The exercise helped me stave off the lethargy that sets in when you are hypothyroid. Often the first ten minutes of my workout I would feel like I was half asleep but by the end of the workout I would feel invigorated. This feeling usually could last the rest of the day—exercise proved to be a natural stimulant if I could just get the willpower to get started.
The second week post-surgery, I got on the elliptical trainer and indoor bike several times and managed to fit in a few short, gentle swims (so as not to tug on the incision site), and finally a short run.
The RAI treatment I was to receive was going to require me to stay overnight in a lead-lined room at MGH. They would let me leave once my radiation levels had fallen below a safe limit to be out in public. Even so, the recommendation is that I not sit close to a child or pregnant woman for more than 5 minutes for several days after I got out. I also had strict guidelines to follow about toilet-flushing, handwashing, laundry, and even the dishes I used because my bodily fluids (saliva, urine, sweat) would still be slightly radioactive. I have to admit that it was slightly concerning that I was dangerous to be around for more than 5 minutes—what was it doing to ME who was being exposed constantly for several straight days?
Michael and I decided that he would take Jenna to visit my parents in Connecticut for a few days because I thought it would be excruciating for both of us to see each another and be unable to hug or cuddle or even have her sit next to me while I read to her. So, on August 31, I said goodbye to Jenna and Michael and drove myself to MGH to check in that afternoon while he drove off with our blissfully unaware 18-month old in the opposite direction.
The room I was to stay in was plastic-coated and lead-lined. Nurses would only be able to come in the room for a few minutes so they would not be exposed to the radiation. I was allowed to bring in books and my computer I was relieved to learn. But most everything else I touched was to be disposable as it would be contaminated. Even the TV clicker was covered in plastic!
Soon Dr. Daniels brought in a lead flask with what looked like a big poison symbol on it (that is what I remember, but it was probably “Danger Radiation” sign). He took out my radioactive “cocktail” and I said a quick prayer even though I am not particularly religious (can’t hurt to cover my bases!) and gulped it down. It tasted like raspberry. I drank water constantly the rest of the day as directed to try to flush the unabsorbed radiation from my system as quickly as possible. I sucked on lollipops because the advice I had read was to keep the saliva gland working so that it keeps flushing. I felt OK that night except for being slightly nauseous.
I awoke from a pretty good night’s sleep with my left perotid gland sore and swollen like a golf ball—the exact spot that had swelled up after the Cleveland race. I immediately went back to the lollipops and also got some ice to put on it and did constant massage to keep it flushing. This occurrence solidified in my mind that the previous swollen neck was not the mumps but a reaction to the tracer dose. The front of my neck also swelled up some and the stiff neck started to ache again. Ibuprofin and ice helped. I was tested for radiation several times throughout the day but my level was too high to be let out. I hunkered down for another night in my isolated room.
I kept up the lollipops and the massage and ice on my neck and it succeeded in keeping the sore perotid from getting too bad. I noticed that the inside of my nose was red and sore—it felt like the lining had been singed. This was powerful stuff!
At 9 am on September 1, my levels were low enough that I could go home. It was a nice present for my 39th birthday. I was able to start back up on my Levoxyl and supplemented with Cytomel until the long-term hormone could build up in my system. I went for a run that day and felt like I was running in quicksand for some reason. My stiff neck gave me a few zingers, too. But I felt a little better a once I was done. I imagined that I was sweating out some more radiation and that was a good thing (as long as I did my laundry as directed!).
I slept in the guest room for a few days and Michael finally brought Jenna back after a week away. I went for a full body scan, which determined that the cancer had not spread. (Phew.)
LIFE AFTER (THYROID) DEATH
I attempted to do some training the next month but it became apparent that I just couldn’t recover from workouts. I was getting slower and slower and feeling worse and worse. I decided not to race in Hawaii and backed off on the training to try to let the body rebuild on its own time. My amateur assessment of what was going on was that my stomach lining was damaged and was not absorbing nutrients well. I had giardia several years before and had the same rundown feeling when I was getting over it. I also had another incident recur—after eating a steak, my stomach had gone into a spasm for a couple of days—it was like the red meat was too hard for the stomach to digest in its fragile state.
I reset my sights on the 2001 season and spent extra time with Jenna and Michael and took advantage of the reduced training time to finish my taxes and play other sports like tennis for fun. Within a couple of months, I was feeling much better and got back to a full training schedule.
As a nice confirmation that my post-cancer body was as happy as my pre-cancer body, I won my 7th Pro Nationals in August of 2001. (It helped that the swim was with the current!) I also went on to finish 5th in the 2001 Hawaiian Ironman at the age of 40.
I have periodic check-ups and so far have always had a clean bill of health. My endocrinologist (I switched to Dr. William Burtis in Concord for my ongoing care once the RAI treatment was complete) checks that my thyroglobulin levels are undetectable (which means that the thyroid is not producing any), my free T4 is slightly elevated, which will keep my TSH (Thyroid Stimulating Hormone) low. (This is called suppression therapy.)
I did a scan one year after the treatment using Thyrogen, a drug that prevents you from having to go hypo to get good uptake from any remaining thyroid tissue. That is a welcome change in method as many thyroid cancer survivors dread the annual week-long hypo phase. My scan results were good—no sign of growing thyroid tissue.
IF AT FIRST YOU DON’T SUCCEED…
One issue that cropped up post-treatment: my husband and I wanted to have another child. The recommendation was to wait 6 months to a year after the RAI treatment before trying. We decided to be conservative and waited the full year. We started trying in the January of 2002. It took nine months before I finally got pregnant, but I miscarried just a few weeks later. We tried again and I miscarried after a few weeks again. Given my age, I went to visit a Fertility clinic to see if there might be a problem. They analyzed my risk factors and uncovered that my suppression therapy called for keeping my TSH low. Apparently, low TSH is a risk factor for miscarriage. So is running according to them. (I am skeptical—if running caused miscarriages, there would be no need for abortion!).
Anyway, I decided to reduce all my risk factors. So the next time I got pregnant, I stopped running until after my 1st trimester and Dr. Burtis agreed to reduce my levoxyl to 150 mcg to allow my TSH to rise a bit. We don’t know if my changed medication made the difference or not, but this time the bun in the oven continued to grow and our son Casey was born in January of 2004.
This seems like a good time to wrap up this novella. I hope these details might help some of you avoid some side effects and give you the confidence that you can get through this or whatever other hurdles you may be facing.
Footnote: I have been in contact with dozens of athletes that have written me about their diagnosis and treatment. I have learned that I am quite fortunate that I had no lingering side effects from the surgery. I was also lucky to find a dose of levoxyl immediately that I felt great on. Others have not been so lucky—many complained that they are tired all the time and don’t have the same energy level they had before treatment and want to know if this is permanent. Knowing these are usually very motivated athletes who want to get off the couch and exercising, I was concerned for them and pushed them to tell their doctor the dose was not right despite what the blood work says. Athletes know their bodies better than most so trust your instincts!
I eventually heard about combo therapy—taking both T3 and T4 in pill form. Your body converts T4 to T3 as it is needed so the common wisdom is that T4 is sufficient and best because a pill form of T3 causes a sudden spike in your levels because of its short half-life. Most people taking T3 need to take it twice per day to spread the dose out some—taking it in 3 or 4 doses is even better but is not practicable for many people. I advise people that are struggling to feel normal on just T4 to look into combo therapy as a possibility. Everybody is different and what works for the majority may not work for you. Anecdotally, the combo therapy has worked for many of the people with whom I have corresponded.