I was diagnosed with Medullary Thyroid Cancer on April 6, 2010, after a fine needle biopsy. After additional blood work, it was determined that I had Sporadic Medullary Thyroid Cancer, which means that it is not hereditary.
I had spent the last two months having many different tests done to determine why the right side of my neck was stiff and in pain, which had been going on since the previous summer. I also had a sore spot above my collarbone near my neck that was sensitive to the touch – I literally wouldn’t let anybody touch my neck for weeks because of the discomfort. I started going to our excellent family chiropractor, Dr. Ron Kulik, to see if it was an issue with my alignment. After a few months of trying to help me with adjustments, he suggested that I go see another doctor to focus more on thyroid or lymph node issues.
The other doctors I began seeing didn’t seem to think it the pain was serious. I had an ultrasound on the sore spot (with nothing unusual found), an x-ray on the neck (with nothing found), general bloodwork (with nothing unusual found), and a MRI on the neck (which showed cloudiness on the right side of the thyroid and suspicious nodes). After talking to a surgeon, he recommended a fine needle biopsy. When I went for the biopsy in mid-March, the doctor decided that he didn’t want to proceed with the biopsy because he didn’t feel that the node was suspicious. My parents and I were quite surprised and they were not satisfied. My mom then proceeded to call our family doctor. That doctor soon recommended a full-neck ultrasound. The results did in fact show a 2 cm node on the right side of my thyroid and enlarged lymph nodes on the right side. I was then sent back to the surgeon who sent me back to the same biopsy doctor for the April 6 biopsy that he did actually do.
After the biopsy was performed, the doctor left the room to study the cells. He came back soon after to tell us that I had thyroid cancer. He then explained that I also had a rare kind that might be hereditary and that we needed to see a surgeon. Hearing “you have cancer” was a huge shock to me, that’s for sure. But after some tears that first evening, I actually went to watch a soccer game at my high school that same night. I remember thinking that I wanted to make this a positive experience, and I remember my mom telling me that God would help. My friends and family were supportive right from the start.
After some urgent medical discussions with doctors, my parents decided that my medical care should be conducted at Johns Hopkins Hospital in Baltimore, Maryland. Dr. Douglas Ball became my endocrinologist, referred to us by Dr. Ralph Tufano, the Hopkins surgeon we were referred to who took my case. Dr. Tufano then referred us to Dr. Sara Pai to be my primary surgeon since Dr. Tufano was going to be traveling a lot during the time of my treatment/surgery timeframe. Luckily, when it was time for my surgery, both Dr. Tufano and Dr. Pai were able to be in the operating room.
My first surgery (the only cancer surgery so far) was very extensive and took place on May 17, 2010. Luckily, before surgery I found out that I didn’t have the hereditary version of Medullary Thyroid Cancer, so that eliminated a few surgical issues. Still, the cancer had spread beyond the lymph nodes on the right side, and the doctors had to remove some things that we hadn’t been prepared for. They had to remove the nerve to my right vocal cord, so I had a voice that sounded something like laryngitis. They had to remove a few more nerves and muscle tissue (like the nerve to the right side of my diaphragm), so I also had some numbness in my right shoulder/neck area. The surgeons did an amazing job.
During the summer, I had to deal with discussions of radiation treatments as well as a vocal cord procedure and speech therapy appointments to try to improve my voice. We also were honored to meet with Dr. Sam Wells, at NIH, who specializes in this rare cancer. He spoke about possible clinical trials that I may be able to qualify for after I turn 18. There was only one pediatric trial available, but I didn’t qualify because I didn’t have the hereditary version.
At the end of July, I was at Johns Hopkins for two days of more tests/scans which included a neck ultrasound, a bone scan, a CT scan on the neck and two MRIs. It was quite an exhausting experience to have so many tests in 1 1/2 days.
After the results came back, discussions followed regarding whether I should have radiation since clear margins weren’t achieved everywhere during surgery, so I had microscopic cells left behind. Plus, the ultrasound showed some suspicious nodes on the left side (which turned out later not to be cancer, thank goodness). Dr. Tufano felt especially strong that I should have radiation, and a compromise was decided that I would have radiation focused on just the right side which would enable a surgery on the left side if necessary. I understood that radiation didn’t really help with Medullary tumors, but it might be successful with microscopic cells.
In the meantime, on August 26, I had surgery to improve my voice that was very successful. Another great doctor at Johns Hopkins, Dr. Lee Akst, performed this surgery. He injected a durable solution into the right vocal cord to thicken it up which then allowed the left vocal cord to hit it more strongly. My voice improved immediately by that evening, and my voice sounded close to my “old” voice within a week or so, making it much easier to talk. You really don’t think about how much you take advantage of with everyday things such as talking, yelling, singing, until you are unable to do so – I was very thankful that my voice was seemingly getting back to almost normal.
On September 15, I had a PET scan. The doctors hadn’t really focused on this test, but my mom had asked a few times about why this one wasn’t being done. Dr. Ball decided to do one at this time. The scan showed no suspicious nodes on the left side which was good news; however, it did show a new suspicious node where surgery had been done. This confirmed that I did have to try radiation in that area even if it didn’t take away the node. Perhaps it could stunt its growth as well as stop other cells from growing.
Later in September, we found a wonderful radiation oncologist based at the INOVA Loudoun Hospital campus in Loudoun County, near us. Dr. Kin-sing Au started my radiation treatments on October 4. I had 6 weeks of treatment, every day after school from Monday through Friday. The process wasn’t too difficult. My mom and I went each afternoon. Each treatment only took 6 or 7 minutes, but there was a little setup needed. Sometimes I even fell asleep on the table. The nurses were very happy that I was so comfortable. My skin did discolor after a while on the right side, and there was even some peeling. I didn’t really have any pain (like intense sunburn), probably because of the numbness that I had in that area from the surgery. We laughed about how this was a good thing for me at the time. I was tired but I still went to school almost every day and just took a nap when I got home from radiation if I needed to.
In August 2010, my parents had found out about a natural supplement called TBL-12, which is made up of mainly sea cucumber. My mom had met another mom of a sporadic medullary teen patient who was taking it. After much research and meeting the distributor, my parents encouraged me to start taking it. The American Cancer Society indicated that sea cucumber can help the immune system and increase energy, so that helped with our decision too. Many people had said it helped put their cancer in remission, and the supplement was being studied in a few FDA trials. I started taking TBL-12 in mid-September 2010. We think that this supplement did help with my energy during radiation (I didn’t miss one day of school during the 6 weeks).
With 4 treatments left, I actually experienced a special Make-a-Wish trip to Nashville, TN, to watch the CMA Awards and meet some country music singers. Dr. Au said I could go for 3 days, without radiation, which was very nice of him. The trip was amazing, and people were so shocked that I was finishing with radiation and still able to take the trip and do everything that was planned.
In early January 2011, I had another series of scans (MRIs and CT scans). After some confusion during January about test results before and after radiation, another PET scan was done in mid-February. The suspicious node in my neck was actually not showing up as cancer anymore and there wasn’t anything else on the right side of my neck either. So it looks like the radiation did help! (Maybe the TLB-12 helped too.)
In late February, my parents were able to obtain an appointment with Dr. Tuttle, who is another Medullary specialist who practices at Sloan Kettering Hospital in New York City. Dr. Ball helped us get the appointment. Dr. Tuttle was so funny and very positive about my future. He said that this cancer can stay quiet for years, that there are more treatment options coming up, that I could go away to college and enjoy myself and that a treatment should only be undertaken if something was going to hurt me. He gave us a few examples of patients with very high calcitonin levels (which is what my cancer produces) where no treatments were being done or the cancer couldn’t even be found. One patient has a calcitonin count of one million! Dr. Tuttle and Dr. Ball work together a lot, and I am so grateful that I have amazing doctors taking care of me.
We talked to Dr. Ball at the end of February, and he decided that I didn’t need any scans until mid-July. It was a huge relief. My parents and I were so excited. Now we could plan for spring break, graduation and summer vacation without worrying about test results. We also saw Dr. Ball in early April to go over my case and talk about college. It was great to hear him say that he’s amazed with my progress over the first year, since surgery. He was very happy that I was doing so well. We talked about the college experience that I want to have, which means I wanted to go to college a few hours away from home (James Madison University – Go Dukes!). He was supportive of the idea, so we left his office with big smiles on our faces.
My next sets of scans were done in mid-July (which included 3 MRIs and a CT scan). We received great news – no progression of cancer – only a few small suspicious spots – and one spot actually got smaller! Dr. Ball was shocked, and we were very happy! I got the “okay” to go away to college, and the next scans would be in December.
My voice had been doing well, but had started to weaken in the spring. After seeing Dr. Akst again, I wanted to have another injection. So it was scheduled for August of 2011 so that my voice would be strong again for starting college. The procedure was successful, and I was so grateful for Dr. Akst and his skills! This was an outpatient surgical procedure, so it was still scary with going under full anesthesia, but it worked; and I’m so thankful!
On December 20, 2011, I had my 3 MRI’s (neck, abdomen/pelvis and bones) and 1 CT-scan of my lungs. Johns Hopkins offered me a new MRI machine that made the whole process faster, which was so great! Instead of being in the MRI machine for about 4 hours, it was only about 1.5-2 hours. My parents and I went back up to Hopkins on December 22 to hear the results of the tests. I was so nervous because I didn’t want to miss out on my 2nd semester at college, and I didn’t want chemo or surgery again. I told my parents that I would cry no matter what the results were – and I did. Dr. Ball told us right away that my results were really good, so I was very relieved. It was so great to hear the good news. The bottom line was that the tests showed no new cancer and also showed that nothing suspicious grew at all. There were 4-5 small spots that were suspicious (a few very tiny), and they haven’t changed since my diagnosis…so really we weren’t sure what those spots were. One spot in the upper neck area was being watched for over a year, and then this time the scan showed that it had shrunk! Dr. Ball said it isn’t cancer. Again, this was another big surprise (on top of the spot that shrunk in July). Dr. Ball continued to be happily shocked with my progress.
I knew that my good reports were due to my positivity, my faith and the TBL-12 supplement that I was/am taking every day. Even my early January TSH blood work came back “normal.” That was so great too so I could stay on my same Levoxyl dosage. Now I didn’t need scans until June 2012. I would have blood work done in March just to monitor the counts. I planned to fully enjoy my spring semester at JMU, and I even wanted to bring Bite Me Cancer to my friends at college.
I had my scans in late June, 2012. Everything came out stable – no new nodes and no new growth in any suspicious nodes that were still being watched! My bloodwork in June showed that the calcitonin was still high, but nothing could be done until tumors are found. I continued to be very positive and kept moving forward. I was excited for my Bite Me Cancer events and meetings this summer. The next set of scans would come in December 2012.
In August 2012, I had another vocal cord procedure to enhance my voice. My voice was weakening again, and I really wanted it strong for my second year of college. Dr. Akst again performed the procedure, and it worked. I really hoped that this time the solution would last longer.
From mid-November to mid-December, I had a variety of labs and scans done for an update to my condition. Again, I had 3 MRIs and 1 CT-scan along with labs to measure my TSH, Calcitonin, CEA, T4 and Calcium. Although my Calcitonin and CEA have been steadily increasing this year, the suspicious small spots haven’t grown and nothing new has shown up – I was happy.
In November 2012, I had my blood work done. The calcitonin had increased again. So we were a little anxious with the scans in December. BUT nothing was shown to be growing! Everything was stable again! The doctor suggested a bone scan to make sure nothing was being missed due to the increasing calcitonin, so that was done on January 4. The results showed that there was no cancer in my bones. We were all so grateful! My next bloodwork was scheduled for early March and then my normal batch of scans in mid-June.
In May 2013, I met with my vocal cord surgeon, Dr. Akst at Johns Hopkins because my voice had weakened once again. I really wanted a vocal cord implant for a more permanent solution, but I had to wait until my June scans because the implant would need an incision. This was complicated because we had to make sure the cancer wasn’t coming back in that area, or it would be pretty risky. I did have my 3 MRIs and 1 CT-scan in mid-June, and the results were great. Everything was stable, and nothing new had grown! Also, my calcitonin and CEA had both gone down slightly, although they were both still high. It was all such good news, and I knew all the prayers (and the TBL-12 supplement) must have been working. I was able to go ahead with the vocal cord implant pre-op to prepare for surgery on July 25.
On July 25, 2013, I had to be fairly awake for the vocal cord surgery, which made me nervous; but I knew I had chosen to do this surgery, so I was ready. I was going to help Dr. Akst in surgery by speaking out loud so I would be able to hear my own voice to basically decide on the sound I liked best. That seemed very weird, but it worked out great. One of the doctors told me that I was crying when I heard my “new” voice and that Dr. Akst told me I couldn’t cry because he wasn’t done yet! That was funny. Apparently, I also told everyone in the operating room that Dr. Akst was the best doctor ever! My voice sounded great right after surgery, before the swelling started; so when my parents came to see me in post-op they were shocked by my strong voice and that I was already able to talk. Shortly after, my voice got raspy that evening and continued for about a week. After that, it took a few more weeks for my voice to settle down; and it’s been great ever since. I went from ½ octave to 2 ½ octaves for my range. The medical staff is very happy with how great the surgery worked. I couldn’t believe that this was permanent, which seemed impossible. I knew I felt so much better already because I wasn’t getting tired each evening after trying to push my voice every day. Also, I didn’t have to drink water all the time to make sure my vocal chords stayed strong. It’s been so great. I went back to college and planned to deal with more scans in December.
On December 18, 2013, I went to Johns Hopkins to have all of my scans. Again, I had a CT-scan for my chest and three MRI’s. On December 21, we received the good news that the cancer was still showing “stable.” Yes, there were suspicious nodes in the chest area and lungs, but nothing had grown and nothing new had shown up. The bloodwork indicated cancer cells were present; but it was great to know that everything remained stable. I was so happy to not need any treatment once again. My next scans would be a little later than “the normal” June scans because I got the amazing opportunity to study abroad for college and wasn’t getting back until early July. It was so great that I could still do everything and experience so much.
In July 2014, I had all my scans (3 MRIs and a CT scan). Unfortunately, a small new spot was showing in the lower lobe of my left lung. Recommendations from doctors went all over the place – one wanted immediate oral chemo, one wanted lung surgery, one wanted to wait and see. It was an emotional time for my parents and I. I had to add a lot of doctors’ appointments to my early August schedule to figure out what to do before school started. I even went up to Sloan Kettering Cancer Center in New York City to talk to a surgeon about a possible lung surgery. He convinced me that this was the best approach to take instead of oral chemo – and it needed to happen ASAP. I went back to school for a few weeks in order to ensure that I could start and stay enrolled in my classes, and then was off to NY for surgery.
Unfortunately, during the surgery the surgeon saw that the cancer spot had gone over a little to the upper lobe; and he didn’t want to remove the whole left lung. What I learned was that you can’t just “take out a small chunk of lung”; it’s either a whole lobe or nothing. Basically, I woke up after surgery, still being able to breathe normally – so I thought, awesome! This isn’t as bad as I thought…only to be told by my parents and surgeon that it was unsuccessful. That was emotional. What if the chemo didn’t work? There’s no other treatment. I then decided I had to go back to my Johns Hopkins doctor and plan for oral chemo. At this time, I was also planning to go back to college for my senior year. There was so much going on and quite a rollercoaster ride of emotions and schedules. After about 2.5 weeks of recovery time, I went back to school to complete my senior year.
In October 2014, I started the oral chemo pill. There are 2 pills for Medullary Thyroid Cancer, and both were approved just in the last 2-3 years. There weren’t a lot of side effects to start off, however some did occur. They included extreme skin sensitivity (sun burns, breaking out, rashes, etc.) I felt a lot better though day-to-day. This pill was/is something to be taken each day to turn off a signal in the specific cancer cells. It impacts some other cells too, but not like traditional chemo does. I had/still have to get labs done each month or so as well as an EKG every so often. I also take my blood pressure every day to make sure the pill isn’t impacting my heart in a negative way. I was very focused on my senior year and having lots of fun as well, so I was optimistic in the hopes that this oral chemo pill was something I could take for a long time.
In January, 2015, I had all my routine scans and labs. Luckily, reductions were shown in some of the spots; and most importantly, there were no new growths! My counts went down a lot with my calcitonin going from 23,897 in September 2014 to only 1,235 in December 2014! My calcitonin count has never been that low! We were all very excited and grateful! I was VERY excited and happy that the Caprelsa was working for me.
In late May 2015, I had all of my scans and labs again. My calcitonin went down more to 416!! My CEA has been going down to, from 143 in September 2014 to 68 in May 2015! The scans also came out stable, except for a little concern in my lower left lung again. BUT my doctor didn’t want us to be concerned. I was referred to a lung specialist at Johns Hopkins who works with Dr. Ball a lot and is very familiar with thyroid cancer. She met with me; I did some breathing tests; and she said that my lungs are in good shape. She wasn’t concerned, and she will stay involved with my case. Now, I wait until October for further tests. I still take Caprelsa every day, and my side effects are manageable. Sure, I don’t enjoy the skin irritations (dryness and acne especially on my back); but I am grateful this drug is available and my body is tolerating it as it fights the cancer.
In November 2015, I had all my scans and labs done once again. Everything showed some improvement again! The CEA and Calcitonin counts reduced again, and the scans showed additional shrinkage of spots. Even the lower lung area showed slight improvement. I will continue to take Caprelsa and go another six months until the next batch of scans and labs. The skin issues (rash, dry skin, breakouts) have gotten a little worse over the past few months, but my dermatologist continues to help me find treatments to try to improve things. I know these issues aren’t as important as my overall treatment plan, but they can be draining at times. I have been working out a lot more as I train for my first 5K run, and the physical exercise does help me feel better. I’m so grateful that I am feeling good and can enjoy life!
In July, 2016, I met with my cancer doctor, Dr. Ball at Johns Hopkins. I had my routine scans and labs in May and they looked good again. Dr. Ball said my results have been extremely positive and that he’s pleasantly surprised at how well I’ve done on Caprelsa. My counts have remained stable, and he said my counts have reduced about 90% since starting the oral chemo! He asked me how my breathing was, and I told him that I actually ran my first 5K the month before! He was shocked and happy for me. My skin issues come and go, and I’ve had a lot of continued help from my dermatologist so it’s been manageable.
In October, 2016, I had my bloodwork done; and then in early December, I had my scans. Again, all stable with my counts and scans! I continue to take Caprelsa. I’m so grateful for my continued good results!
In February 2017, I met with my lung specialist for some breathing tests. This is to make sure the chemo isn’t doing damage to my lungs and to just see how my lung capacity is doing. The doctor was very happy with my capacity! She feels very good about how my lungs are doing even with the scar tissue and/or cancer that may be in them. She acknowledged that all my exercising does help with my breathing capacity. I really enjoy all my exercise activities!
In May 2017, I had all labs and scans once again. I was so happy to see even more reduction in the counts and still continued success with taking Caprelsa!
In December 2017, it all happened again! My scans/labs showed even more declines and the counts are the lowest ever! I continue my health eating, yoga, cardio and other workout routines to help me!
In June/July 2018, I completed my chest ct scan and MRIs on my head/neck as well as my pelvis/abdomen/kidney area. I had a feeling the scans would come out good since my labs were good in May. My calcitonin and CEA labs continue to decrease…lowest levels ever! On the scans, there are no cancer spots showing! Caprelsa continues to work! My doctor at Johns Hopkins even said “You made my day!” at our last appointment.
Please keep me in your prayers. Thank you.