My blog is unique in that I am a health care professional AND a thyroid cancer survivor. I understand what you are experiencing.
Here is my thyroid cancer story.
Table of Contents
My mother had thyroid cancer when she was 19. She had her thyroid removed and went through radioactive iodine treatment. My entire life she was on thyroid medication, and I always knew about her scar. I didn’t understand the concept of “surgery”, so I conjured a story that a wicked person had tried to cut her head off and then sew it back on.
Thyroid cancer, especially non-medullary thyroid cancers, run in families and occur at younger ages, according to www.cancer.gov. The exact genetic causes are not fully understood. Thyroid cancer is much more common in women. I have since learned that several women in my mom’s family (mother, sister, cousins, etc.) have had thyroid issues over time. So I was at increased risk for thyroid cancer.
When I was in middle school, mom had to switch endocrinologists. Up to that point, doctors had kept her labs at a fairly hyperthyroid levels. It isn’t standard practice now to do this for that long after surgery. According to the American Thyroid Association treatment guidelines, current recommendations are to suppress thyroid stimulating hormone (TSH) for 5 years, at levels around 0.1 mU/L for for those with high risk disease but a good response to treatment. After that point, with no evidence of continuing disease, TSH suppression should be eased to the low normal range, about 0.5 to 2 mU/L with continued monitoring.
Clearly this is not what had happened for my mother. Her new doctor drastically cut her medication. I remember years of her struggling with weight, coldness, and fatigue. She felt hypothyroid all of the time, despite having normal labs. Our whole family felt the effects until she adjusted after a few years.
During my last year of undergraduate studies, my mother was diagnosed with metastatic breast cancer with a poor prognosis. So I chose to spend the summer of 2009 with her before I headed to my dietetic internship and graduate school..
During that summer, my mother pursued genetic testing. She had a prior history of breast cancer, and so did several of her family members. The genetic counselor suggested she do the BRCA gene testing as well as testing for Cowden disease, which shows a link in thyroid and breast cancers. No tests found a genetic link for her cancer.
In the summer of 2010, I started having strange dizzy spells lasting for an hour or two at a time. It was distressing since I lived alone at the time. After a few months, my mom told me I needed to go see a doctor.
I saw a family practice doctor. As part of the physical exam, the doctor asked to watch me swallow. He noticed a small lump in my neck, like a second Adam’s apple to the right side that was noticeable when swallowing only. He suggested a neck ultrasound. However, with my family history, I requested a referral to an endocrinologist.
Referral to an Endocrinologist
In September 2010, I had my first visit with my endocrinologist, who ordered blood work, an ultrasound, and a biopsy. His initial opinion was that it was not cancer, but did not rule out surgery. My estimated cancer risk was 4%.
The biopsy proved difficult because my nodule was filled with fluid. The nodule also had lots of calcifications, which unfortunately is not clearly diagnostic for cancer or not. The biopsy results were “atypical”. Essentially, the cells were not normal but also not clearly cancer. My estimated cancer risk increased to 10%. The recommendation was to wait three months and try a more intensive biopsy, with a pathologist in the room making sure clear results were obtained.
Referral to Surgeon
However, my parents were concerned about waiting that long just for another biopsy. So I went back to the endocrinologist. Because my nodule was large (3.1 cm), it could almost be recommended for surgery regardless of the biopsy results. Given my family history, he referred me to a surgeon.
At my initial visit with the surgeon, he did an ultrasound, another biopsy of the nodule, and a biopsy of a nearby suspicious lymph node. The decision was to perform a right hemithyroidectomy, since the left side had no evidence of nodules. However, a biopsy would be taken during the surgery to determine if it was cancer. The surgery would then evolve into a total thyroidectomy.
Prior to the surgery, the surgeon’s biopsy resulted in a positive cancer diagnosis. So I prepared for a total thyroidectomy surgery the first week of November 2010.
Total Thyroidectomy Surgery
To prepare for surgery, I arranged with my internship to be gone for a week. My mom came to town to help me.
The pre-op wasn’t bad. The surgeon came and drew lines on my throat to see where would be the most attractive and safe place for my surgical incision. We reviewed that it would be a total thyroidectomy as well as removing some lymph nodes around my thyroid. Off to surgery I went!
My hospitalization immediately post-surgery was harder than I had anticipated. I spent a very long time in the recovery room. Once I finally reached my room, it was difficult to sleep with all the medications I had received. My neck was also very sore. My operation had ended up being 4 hours long as they had to remove 10 lymph nodes besides my thyroid. All 6 of the lymph nodes removed from the right side of my neck tested positive for cancer. The remaining 4 on the left side were negative. After a rough night in the hospital, I went home.
At home, recovery was a mixed bag. Unfortunately, the pain medication made me vomit no matter what I tried. My neck and shoulders were incredibly tight and difficult to relax. Swelling at my surgery site concerned me, but the doctor said it was normal. After a week, I felt well enough to return to classes and hospital rotations. I even defended my master’s thesis exactly 2 weeks after surgery.
One difficult part of the recovery was my scar. While much smaller than my mom’s scar, it was fresh and quite noticeable. I had a few patients I met in the hospital somewhat rudely ask, “What happened to your neck?” At the time, their comments hurt as I was very self-conscious. But once I explained, they apologized. I had to realize they were not themselves as they were going through difficulties requiring hospitalization. And the brightness of the scar started to subside.
Radioactive Iodine Treatment
Low Iodine Diet
Starting the week after Thanksgiving 2010, I had to begin the low iodine diet. When my doctors first mentioned it, I was not concerned. I was in graduate school to be a dietitian after all; I knew I would be fine. However, I quickly learned that information on the iodine content of foods was not easily available.
Furthermore, I was single, living alone. Preparing very specific recipes and food for one person was time consuming and frustrating. Trying to eat out with friends and attending holiday parties was difficult.I quickly learned to make my own bread, eat nut butter sandwiches (something I had never done to this point), eat lots of salad, enjoy fruit for dessert, and take my own salad dressing to restaurants. I even had to teach a cooking demonstration for fifty people where I couldn’t eat any of the food.
Thyroid Hormone Withdrawal
Besides the hassle of the diet, I had to completely withdraw from synthetic thyroid hormone for 3 weeks. That was miserable! I was physically exhausted. I actually lost weight because I felt so sick I could barely eat. Dramatic mood swings made relationships difficult. During this whole time, I was dating my now-husband. I remember sitting at work feeling absolutely in love. Two days later on a date, I hated him and never wanted to see him again. He was incredibly supportive and gave me “cancer cards” (actual, literal cards that said “Cancer Card” that I could use to get out of things I didn’t want to do) and claimed to like my sassy attitude. But I didn’t.
Radioactive Iodine Uptake Scan
First up in my radiation treatment was a radioactive iodine uptake scan. I drank a small dose of radioactive iodine before having a scan to see what traces of cancer remained. No isolation was required, but I needed to be cautious around pregnant women and young children. This led to an awkward conversation with the nail technician as some friends and I got end of semester pedicures.
Radioactive Iodine Treatment
On December 10, I received my treatment dose of radioactive iodine. The hospital did give me anti-nausea medication, as vomiting the radioactive iodine drink is a pain to clean up. I felt really sick after. I drove myself home and commenced my five days of isolation.
Well, almost-isolation. That afternoon, I discovered my bathroom sink was leaking in the cabinet underneath. Maintenance came to fix it quickly, thank heavens. But I had to talk to him through the doorway and tell him to stay as far away from me as possible; difficult, since I lived in a studio apartment. I must have looked as awful as I felt, because the maintenance man offered to pray for me.
My aunt and uncle also came to town for my radiation. They came once a day for the weekend for about an hour to check on me. We would chat while they sat across the apartment from me. The nurse in charge of my care said this would be OK since they were older and had low other risk factors. It was also helpful as I ended up needing some things from the store to deal with the side effects of radiation.
The biggest side effect I suffered from the radiation was dry mouth. Your saliva glands can absorb the radioactive iodine, causing some inflammation if it sits there. You want to stimulate saliva so it can work out the radiation. Radioactive iodine can also change the acidity of your saliva causing dental problems. The nurse told me to drink lots of water and suck on lemon candies. Ice chips helped as well.
The other main issue I had during this time was constipation due to being so hypothyroid. I drank a ton of water, took stool softeners, ate high fiber foods, everything they tell you to do. Once I was able to start thyroid hormone replacement again, this symptom quickly resolved.
After five days, I came out of isolation carefully. I was able to go out for lunch with a friend – bringing my own plastic utensils and salad dressing. I also saw movies one afternoon just to get out of my studio apartment. This was challenging because anytime a woman of possible child bearing age entered the theater I had to move away from that area. But the change of scenery was good.
After seven days, I got my post-radiation scan and drove home for Christmas break. My dad and I then drove cross-country to my brother’s home for the actual holiday. I had to sit as far away from him as I could during the drive. At my brother’s house, I had to limit my time with my nieces and nephews. I had been so excited to be done with the low iodine diet that I was planning the things I would eat – pizza, Chinese food, ice cream, chocolate. But for over a week after isolation, I still felt so sick that nothing tasted right.
Eventually, things started coming around. My thyroid replacement medicine was increased. My hair stopped falling out, and I stopped losing weight. I started feeling like a human again. I even found time to get engaged and married.
Radioactive Iodine Round 2
In September 2011, my thyroglobulin labs had a weird bump. Thyroglobulin is a protein made by thyroid cells and is used as a marker for cancer after thyroidectomy. The increase in thyroglobulin was concerning for a cancer recurrence. My doctor ordered radioactive iodine scanning and possible treatment.
Low Iodine Diet, Again
This time around, the low iodine diet was a bit easier, since I had done it before. The trickier part was that I was married now and cooking for two people. . Also, I got to celebrate a low iodine birthday. My husband made homemade tortillas so I could enjoy a taco party with friends. And the cake actually wasn’t half bad.
Thyroid Hormone Withdrawal, Again
Thyrogen is a drug patients can take to simulate thyroid hormone withdrawal without actually going off medication. The hospital told me that I “did not qualify” for this drug. So I had to go off medication, again. I was still lethargic and decreased appetite. But it wasn’t as hard as previously.
Radioactive Iodine Uptake Scan
In October 2011, my scan came back clear. However, the ultrasound showed an enlarged lymph node on the lower right side of my neck.
My surgeon attempted a biopsy of the lymph node, but it was difficult to reach. The biopsied tissue came back benign. My subsequent blood tests all came back normal. None of my doctors were concerned.
In the following years, I got pregnant, had a baby girl, and moved from Chicago to Colorado. When it came to transferring my care, I didn’t do much research. I just found the university health system in the area. I had worked with university health systems and found them to be up to date and good places to receive care.
In January 2014, I had my annual neck ultrasound, which detected a large lymph node on the left side of my neck. The doctor recommended a biopsy. Thus begins the wild ride of my cancer recurrence story.
My mom never received any monitoring besides thyroid labs after her initial treatment. She never had issues with thyroid cancer again. With that background, I felt the monitoring was a waste of time and money. Give me my thyroid hormone and let me move on. Even the lymph node did not concern me.
But I went for the biopsy anyway. Imagine how happy I was when the doctor came in and said, “We can’t actually biopsy that lymph node due to its location. But there are lymph nodes on the right side we can biopsy instead.” After the biopsy, I went home frustrated and confused.
Imagine my further frustration and confusion when I was notified a few days later that the biopsy came back positive for cancer. She referred me to a surgeon. I was not excited.
Referral to Surgeon
My skepticism and bad attitude followed me to the surgeon. I listened to everything he had to say, and we tentatively set a date for surgery – a right lateral neck dissection. In non-medical terms, he would reopen my original incision and then go up the right side of my neck, removing any lymph nodes he could find – cancerous or not. A few days later, I decided to cancel the surgery since I thought he had said surgery was not necessary.
Many phone calls followed. The surgeon called me to explain that no, I really needed surgery. I called my surgeon in Chicago to ask for a second opinion. That surgeon confirmed he would operate to remove the cancerous lymph node, but not do a full neck dissection.
I fumed for a couple weeks. Thyroid cancer is the good cancer; people don’t die from it that often. The survival rate for papillary thyroid cancer is near 100%. I definitely didn’t want to have surgery.
Finally, my endocrinologist called and explained that surgery really is the recommended course of action. She would not recommend postponing it longer than six months. Her logic convinced me, so I rescheduled for after Easter 2014.
This surgery was different. They gave me a patch behind my ear to help with nausea. The surgery involved a lot of delicate work around nerves controlling my speech, mouth, swallowing, etc. Sensors placed on my nerves would alert the surgeon if things went wrong. I was also nervous, as the surgeon said recovery from this would be worse.
Initially, he wasn’t wrong. I woke up in pain. I had a drain out of my neck which was awkward and uncomfortable. Between an uncomfortable hospital bed and a roommate who yelled in her sleep, I didn’t sleep much after the surgery.
I’ll never forget the surgeon’s words the next morning: “Do you want to stay here and be miserable or go home and be miserable? If it was me, I’d go home to my own bed.” I took his advice and went home, thanks to a patient husband who learned all about the drain care.
Recovery from this surgery wasn’t as hard, despite the surgeon’s warning. It helped I remembered all the shoulder pain from before. I frequently forced myself to relax my shoulders and neck. Really, the only bad part was the drain. I was able to get that out after about 5 days, and then had no pain or issues.
At my post-operative visit, the surgeon informed me that he had removed 22 lymph nodes from the right side of my neck. However, the only lymph node that tested positive was from my lower neck – the one biopsied way back in 2011. He did a neck ultrasound prior to surgery, saw the nodes as he took them out, and noted they looked bad. His only thought was that the nodes were very cystic and likely collapsed when they tried to get a sample. Therefore, the pathologist was not able to run a good test on the tissues.
Despite all my skepticism going into all of this, I felt complete peace through his explanation. I trust him that he got the nodes and it was a fluke in the pathology testing.
Radioactive Iodine Round 3
Low Iodine Diet…AGAIN
Then the joyful news of needing the low iodine diet for a radioactive iodine scan…again. Like everything else in this round of treatment, I went in with a bad attitude. I was now preparing food for my husband, daughter, and myself. I didn’t want to force them on low iodine but also didn’t want to make lots of different food. Once I got going though, I found having to cook real meals for my family forced me to be creative and look for ways to eat delicious, low iodine food, rather than just survive the three weeks.
I took thyrogen instead of going through thyroid hormone withdrawal. For this, I went in for one shot, once a day in the two days before my scan. So much more pleasant than all the side effects I’ve mentioned before.
Radioactive Iodine Uptake Scan
Great news this time around, too. No uptake on my radioactive iodine scan. Hopefully, this means I really have no thyroid cancer left in my body.
Life Now and Going Forward
Now what happens in my thyroid cancer story?
Since my recurrence, I’ve had yearly ultrasounds and regular blood work. Everything has looked good.
I have successfully gotten pregnant and delivered three more full-term babies. Dealing with my thyroid hormone levels during pregnancy and breastfeeding was an adventure. The one plus was I quickly lost my post-baby weight. My endocrinologist always wanted to gradually bring my pregnancy doses down post-birth to make sure I could have a good breastmilk supply. With my third baby, I was at my pre-pregnancy weight within two weeks. Gotta look for the positives.
I have discussed with two different endocrinologists that I will not consider further radioactive iodine treatments or scans. Since I have had two clear scans, especially the one in 2011 when I had cancer in me, I feel that they are not effective in monitoring my cancer. They have been agreeable and suggested PET scans for any further cancer suspicions.
For now, I’m considered a low risk. After being cancer free for five years, my thyroid replacement doses are lower. My TSH goals are no longer down to .01 mU/L, but more in the low normal range. So far, I haven’t noticed a big difference in how I feel.
How do I use my thyroid cancer story? First, I want to help those close to me. I’ve shared recommendations with my immediate family members on what they should do to monitor their thyroid health. I try to be mindful of my children getting thyroid collars when exposed to x-rays. As my children get older, I will make sure they receive neck exams.
Second, I have this blog. I want to share my experiences as well as any knowledge I have gained to make your thyroid cancer story be a success. Even if I’m just here to validate your story, that is a win. I have multiple friends that have had thyroid cancer. We are sounding boards for each other and a support group.
You are not alone. We all have our thyroid cancer stories and can build up and help each other.
Want more support?
I have a Facebook group for thyroid cancers survivors: Thyroid Cancer Survivors Nutrition and Diet Support Group. Click on the link, answer the questions, and join us!