My Thyroid Cancer Journey...so far

Happy Friday friends! September is Thyroid Cancer Awareness Month so I thought this would be a great opportunity to share my journey. As I write this, I am preparing to have my second surgery on September 12th, 2022. As many of you know I had the right half my thyroid out in January of this year. That is how I found out I had cancer. However, my journey begins long before that.

Last year in September 2021 I went for my annual checkup at the OBGYN. I was hoping for an uneventful appointment because the last time I visited her I found out I had PCOS. Since that visit, I got those symptoms under control, so I thought there was nothing to worry about. During my checkup my doctor felt my thyroid. She felt 2 lumps on the right and left side of my thyroid. She decided to play it safe and ordered some bloodwork and an ultrasound of my thyroid. She explained to me that women with PCOS can also suffer from thyroid issues. I was upset and my mind started running a million directions. I tried to stay calm and booked all my appointments.

A week later I went in for the ultrasound and bloodwork. Two days later my OBGYN called me. My bloodwork was normal, but my ultrasound showed two large thyroid nodules on the right and left. She told me to make an appointment with an endocrinologist so I could get a biopsy done on the nodules. I knew the odds of the nodules being benign were pretty good, but I was still nervous.

I searched the internet looking for the best endocrinologist I could find. I settled on the endocrinology team at Johns Hopkins. To this day I believe that God moved Marek and I to Maryland so I could receive the excellent medical care that I have had at Johns Hopkins.

I was able to schedule an appointment for the end of the month. I met with the endocrinologist, and she agreed that I needed a biopsy. She also warned me that even if the biopsy came back with both nodules being benign, I would still potentially need surgery due to how large they were. I wasn't thrilled by that news but decided to focus on one thing at a time.

I had my biopsy done three days after my 29th birthday. It was probably one of the most uncomfortable medical produces I have ever experienced. They literally numb your neck and stick a needle into it. The whole time I laid there with my eyes closed just praying while the nice nursing student held my hand. The nodule on the left came benign.... yay!

However, the right came back as inconclusive. So, they had to send my sample out to California for genetic testing. Two weeks later my results came back. There was a 50% chance that the right nodule was cancerous.

50%. That is such a crappy number, I thought to myself. My endocrinologist called me and gave me the name of a surgeon at John Hopkins. I was able to make an appointment with the first week of December of 2021.

I looked the guy up and he was the best in his field. So, I knew he would be honest with me about what the plan of attack should be. The day of the appointment came, and Marek was able to come with me. The surgeon was so nice and answered all my questions.... several times. He told me I needed surgery but that I had two options. I could get my whole thyroid out or just the right side. If I got the right side out and it came back as cancer, I would have to get the left side out.

He told me the choice was mine, which I loved. I looked at him and said 50% is such a crappy number. He agreed with me. I looked at Marek and said I don't want my whole thyroid gone. So, I decided to just get the right side out. Everyone I talked with agreed that was the smart decision. My surgeon thought I was being smart too. So, we scheduled surgery for January 24th, 2022.

I was able to enjoy the holidays and returned home to mentally prepare for surgery. I did all sorts of research on living life with half of thyroid. The day of the surgery came. My mom flew in to help Marek take care of me.

The day arrived and I was nervous. I had to go in by myself per the hospitals Covid policy. I remember being upset but also at peace. Every nurse and doctor that I met with was so nice and put me at ease. When I got into the OR my doctor informed me that two of my nurses assisting him were named Caitlin. He said that must be a good sign! I agreed. Two hours later I was on my way home.

I was not in much pain except for my throat so eating was hard the first couple of days. Four days after surgery I checked my portal and saw my pathology results were available. I had no idea what they meant so I messaged my surgeon. He replied quickly. He explained that they had follicular thyroid cancer. It was large but appeared not to have spread at the time. He told me I had a very good prognosis but that we would talk more soon.

When I had my follow up appointment, he explained that there are 4 types of thyroid cancer. I had the second most common. Follicular thyroid cancer can spread to the lungs and bones but that the time he didn't believe that to be my case. He explained the best thing to do would be to remove the other half of my thyroid and do a round of radioactive iodine (more on that in a separate post).

I remember feeling a rush of emotions. Sadness, anger, and gratitude. I remember sitting there crying with Marek at my side. We were looking forward to starting a family, travel some, and so much more. This all would now have to be delayed.

I remember looking at my surgeon and saying, "It sucks to be 29 and have cancer." He looked at me and said, "It does suck." He was so genuine and gave me some advice. He told me "Don't let anyone tell you that you have good cancer. Cancer is cancer no matter the prognosis. Live your life and try not to worry too much. Our job is to take care of you, and we are going to keep you safe from this thing."

Although I was still crying and angry, his words filled me to peace.

And now here we are a year later from when it all began. Preparing for hopefully my final surgery. My scans have come back clean, and the cancer has not spread to my lungs or bones. And now we wait to see how the pathology comes back for my thyroid. And then we move onto treatment.

I understand thyroid cancer is something I will always have to live with. Even though my thyroid is gone there is still a chance that it will come back. I know that I will have yearly scans to ensure this. I know that the next 4-6 months are going to be tough as we try and find the right dose of hormone replacement. I know I will be facing chronic exhaustion, sweating, chills, hair loss and headaches until we do. I know that when I have the radioactive iodine, I will have to isolate myself from my husband and dog for several weeks until I am no longer radioactive. I know that the plans I had will continue to have to be delayed for a little longer.

It's hard you guys. I know that it seems like I am at peace with this and for the most part I am. But there are days where I am upset and wish this wasn't happening to me. But every day I am reminded that I am blessed to have a good prognosis. I am blessed to be surrounded by family and friends who love and support me. I am blessed with doctors and nurses who are going to make me feel safe.

My journey is not ending with this next surgery. Thanks for all the love, prayers and support. Talk soon!