Editor’s Note: The theme for the October edition of NOU, “Be the Change You Want to See,” describes NOU contributor, Julie Salman. Diagnosed with thyroid cancer, one of the less common cancers, she wanted to see more awareness for thyroid cancer. So what does she do? Decides to share her story with our 36,000+ NOU readers and constantly makes an effort to get the word out to all people she meets about thyroid cancer – educating the world, one person at a time. Way to go, Julie!
Facing the Challenge of Thyroid Cancer and Hypothyroidism
I have always been somewhat healthy and tried to maintain an active lifestyle, regularly exercising by biking, skiing, playing with my kids, running and walking the dog. The only time I ever spent in a hospital was during the births of my three sons, ages thirteen, eleven and seven. So the idea that I might one day have cancer never really crossed my mind.
That is, until in 2011 when I was giving an important marketing presentation to a group of physicians and administrators at the MetroHealth Medical Center in Cleveland, Ohio. During the presentation I sensed that one of the physicians was looking at me unusually, but I didn’t think twice about it. He later approached me and said he was concerned about a bump on my neck. I joked that I had yet to lose my baby weight from my third child and the bump was probably from excess weight. Still, he encouraged me to go to the doctor and have my thyroid examined.
When I returned to my office I mentioned the comment to my co-worker, Craig, a physician, expecting him to laugh it off as well. Instead Craig asked if the doctor was referring to my goiter. I was so shocked he also noticed my neck that I almost fell over; I thought my neck looked perfectly normal. I immediately scheduled a doctor’s appointment and went the next day for a physical. The primary care physician didn’t seem alarmed by the appearance of my neck, but she decided to order an ultrasound. The results showed a nodule on one of the lobes of my thyroid. She recommended I meet with a surgeon at MetroHealth Medical Center who specializes in thyroidectomy. Even at that point I could not believe how quickly my life was changing. One minute I had what I thought was a harmless bump on my neck. The next I’m having a surgical consult about removing part of my thyroid. Prior to even discussing surgery, it was recommended that I get a biopsy.
Within just a few weeks I had two biopsies, both of which showed inconclusive results. The cautious person in me wanted to have all the information available before I made a decision about next steps. So I consulted with two of my sisters, who are nurses, and my husband, Mark, and also did extensive research online. The surgeon, whom I trusted and respected, said if I were his wife, daughter or sister, he would encourage me to have one lobe of my thyroid removed – a simple, outpatient surgery. “What if something is wrong? What if that nodule is cancerous?” Even at this point I did not believe that I might have cancer. I had no symptoms and surely the biopsy would have indicated if the nodule was cancerous. But I scheduled the surgery anyway, planning it around my son’s first communion and an upcoming family wedding, feeling optimistic and fully expecting it all to go smoothly.
The scariest part was when I woke up from surgery. I didn’t even hear the word cancer, but I knew something was wrong. I was scared, and instantly felt that the hospital staff was treating me differently. One of the nurses eventually told me that they had to remove my entire thyroid gland. While I was under anesthesia, the pathology report delivered an inconclusive result; however, the surgeon was not confident that the nodule was benign, so Mark was forced to make the difficult decision to remove my entire thyroid gland. We hadn’t discussed the possibility that they might have to perform a thyroidectomy. I felt terrible that he was put in such a stressful situation regarding my health. But in hindsight he made the right decision because ultimately, the pathology report confirmed that the nodule was cancerous; I was diagnosed with stage 1 papillary thyroid cancer.
Recovery from my thyroidectomy was challenging and also painful. I tried not to use too many pain medications because I wanted to avoid side effects. During this time I was exhausted and fatigued. I could not lift anything over five pounds, which was difficult given that my two-year-old son weighed about 25 pounds! I also began treatment with thyroid hormone replacement therapy, which I would need to continue for the rest of my life.
Two to three days after surgery, I followed up with my surgeon and endocrinologist, both of whom recommended that I receive radioactive iodine ablation therapy to remove any residual thyroid cancer cells. I learned that this is a standard procedure following thyroidectomy performed for differentiated thyroid cancer. I was concerned because the radiation meant I had to be isolated for several days after treatment. I couldn’t be around my children and husband or go to work. As a mother and wife, I immediately thought about all the preparations I would have to make, including relocating my youngest son, arranging for rides to activities, meal preparation and getting help to manage the house. It was overwhelming. Also, in order for the treatment to be successful I would need to be in a hypothyroid state, meaning I would have to stop using my thyroid hormone replacement therapy about three weeks prior to treatment.
There is never a good time to hear that you have cancer, but my news came at an especially bad time. Mark had been laid off two years earlier and had just started a new, very demanding job. I had gone back to work full-time and life with three active boys was very busy. We were both overwhelmed, but now we were dealing with a cancer diagnosis.
Adding to these challenges, I soon learned about the effects of hypothyroidism – the condition that occurs when the body does not have enough thyroid hormone. In preparation for my first radioactive iodine ablation therapy, I experienced symptoms including weakness, fatigue, depression and irritability, course, dry hair and weight gain. I looked and felt terrible, and it was difficult not to let my emotions affect my family. I remember one of my kids saying, “Mom is crabby and sad.” I shared my concerns with my endocrinologist to see if there was anything I could do to prevent these symptoms, but he said that this experience occurs when you stop taking thyroid hormone replacement therapy in order to prepare for the ablation process. Because of these symptoms, my doctor recommended that I take some time off from work and get help with the kids. It was difficult to hear that my up-and-down emotions, lack of energy and sudden weight gain were a permanent part of the package. Coupled with the emotional and physical stress I was experiencing, the treatment was especially hard on my middle child, Jack. I still get emotional when I think about how he didn’t understand why he couldn’t come into my room and kiss me goodnight during the isolation period.
After receiving treatment my first scan was negative; however, at my six-month follow-up my endocrinologist found trace amounts of thyroid cells still present in my neck and encouraged me to undergo radioactive iodine therapy again. My heart sank; I thought I don’t have any more vacation time and I don’t want to continue to inconvenience my family or anyone else. I already felt that between surgery and my first round of treatment my husband and kids had sacrificed enough.
Fortunately, my second round of radioactive iodine therapy was much better than the first, specifically because I did not experience any hypothyroid symptoms. I had more energy and a more positive attitude. Furthermore, because I wasn’t hypothyroid, I didn’t have to take additional time off work (other than the isolation period) and thankfully, I avoided the depression and other side effects.
It was a struggle to get to this point, but I am now cancer free. The moment the doctor gave me the news, I hugged my husband and my kids. I still follow up with my endocrinologist twice a year and have blood tests every six months to confirm that my cancer has not returned.
Throughout my cancer diagnosis, I tried to be strong and positive for my family while educating myself throughout the entire ordeal. Like me, many other people undergo thyroidectomy and radioactive iodine therapy – and many of them suffer from hypothyroidism. I am taking steps to help raise awareness of the risk of hypothyroidism in an effort to make sure that more people can avoid or better manage their hypothyroid symptoms. I encourage anyone to get as much information as possible and to discuss all of their treatment options with their physician to help make the best choice possible. Luckily I did my research and learned that the cure rate for thyroid cancer is exceptionally high and that treatments are often successful. While my cancer diagnosis was scary and overwhelming, I now look back and consider it just a bump in the road and continue to be grateful.