Patient story

I have hundreds and hundreds of different flowers, and bushes, and trees, and vegetables. I have over 55 hydrangeas out there right now. In the springtime, there’s about a thousand daffodils and tulips all over the property. It’s a place that I can go unwind, completely de-stress about anything that’s troubling me. But it also gives me a place to share. I can share food. I can share flowers. I can share comfort. The biggest compliment that I can have is knowing that somebody is out there enjoying it just as much as we are. My husband and I put a lot of love and work into the garden to make it flourish.

My name is Julie, and my journey with RET-positive advanced thyroid cancer started in March of 2020. I noticed that I was having a really difficult time walking up a hill without having to take breaks in between—something I would’ve expected somebody much older to be challenged with. And so I just noticed that the issues with the tightening in my neck and just being short of breath, that all three of those things led me to want to go get it examined.

So I went to just my regular doctor. I had some basic tests done. They did a chest X-ray. They did a basic blood panel, and everything came back fine. No worries. No concerns. And then a few months later, things hadn’t improved. And that’s when I found the lump on my neck. I went back to get an ultrasound and a CT scan, and the results are what sounded the alarm bells. My ENT surgeon found a very large mass in my mediastinum. He did a scope down my throat and said, “Yep, you’ve got thyroid cancer.”

And when we got home that night, it was like, we discussed it and I said, “I’m not leaving your side. I’m going to every single doctor’s appointment with you. And we’re gonna tackle this.”

After consulting with my doctors, I opted to have surgery to remove my thyroid and the mass in April of 2020. Eight days after the surgery, the doctor calls at two o’clock on a Friday afternoon. And I put him on speakerphone. I went into Tony’s office and I said, “Okay, we have the news.” And so he said, “You have a rare and aggressive cancer. It’s called poorly differentiated thyroid cancer.” And I just kept hearing “rare” and “aggressive.” And I didn’t really hear the name of it. And basically he said, “I’ll put a referral in for you to have radiation to your neck. You’ll be put in contact with an endocrinologist.” And basically, “have a nice weekend.” And we were stunned.

So I immediately found an oncologist. My post-surgery CT scan had showed two more nodes that were likely cancerous in my mediastinum. I had a PET scan and I found out the extent of disease and how it had spread.  So the PET scan result gave some really scary news. It told us that the cancer was in both of my lungs. It was on my spine. It was on my liver, and the cancer was not gone. That night that we got those results, when they hit my chart, we cried on the couch for some time. Yeah. It was a hard one. That was a tough night.

We became more appreciative of the little things: our family, the life we had built together. We made things fun, humorous. I think I treat her like she wasn’t sick, like normal. He is so strong. He is so strong. You know, I get bad news and I get scared and I start to worry and he just looks at me like, “We’re gettin’ through this.”

After that night, things changed. The first thing we did with the doctor was look at my biomarker test results—which showed a RET fusion that was driving my cancer. Then we went over the treatment options. I’d never heard of biomarker testing before any of this, but I learned that biomarkers are something that can help doctors determine the type of disease you have and how aggressive it is. Testing for biomarkers may help you and your doctor understand what’s driving your cancer, and allow you to find out if you may be eligible for treatments that target those drivers.

When I found out that I had choices and options because of the RET fusion that was driving my cancer—there were targeted therapies that I could try—that was awesome to know. My doctor shared the experiences that other patients had with a therapy that was approved for advanced RET+ thyroid cancer, called GAVRETO.

After we reviewed all of the information about GAVRETO, including the potential side effects, I was ready to give it a try. I have experienced side effects... some diarrhea and constipation. I have dry mouth. I have just basic overall fatigue. I’m able to still do the things that I enjoyed doing in the past, but I do tire easy.

My care team and I have worked together to help manage these side effects. Thankfully, working from home has allowed me the space to manage these side effects and continue to work at my job. At this point in my treatment journey, I don’t worry as much as I did before. Since being on GAVRETO, I’ve kept my healthcare team informed about how I am feeling day to day. I also continue to get scans as directed by my doctor so that I can monitor my cancer. I’m glad I found my healthcare team and GAVRETO. They’ve given me hope and helped me feel prepared for what lies ahead.

When I first started this journey, I was worried that I would never see my garden grow. And, you know, when I’m out there in that garden, I’m not thinking about my cancer. I am thinking about why won’t my dahlias grow yet? I’m thinking, “Gosh, did I plant my carrot seeds too close to each other this year?”

My advice to anybody that’s going through the same thing as me? It’s the advice I would give to someone who asks about my garden: you’re allowed to start small, as long as you start somewhere. Advocate for yourself. Don’t give up. Knowing what to plant and making a plan can make a big difference. And the same thing can be said when you’re going through something as scary as cancer treatment. You’ll realize that little by little, you’ll be able to take on more than you think.