My diagnosis, like so many of yours, was the shock of a lifetime, having no symptoms at the time it all unfolded one year ago. I am a mom of 3 kids and in late summer 2020, I was busy getting them ready to start school and getting myself ready for my 20th year of teaching. Right before school began, I scheduled my first breast MRI. I have family history and other risk factors for breast cancer, so several doctors suggested I begin this as an annual screening tool. In the very top of the xray frame, they spotted one abnormal node. Dr. Camidge gave major kudos to the radiologist who noticed this as they don’t always catch it. Due to the “incidental find,” they recommended a CT scan which found many more and much larger abnormal nodes in the chest. Twenty-three days after that breast MRI, I learned my diagnosis at the age of 41. That MRI saved my life! I heard the initial scan referred to as the “Hand of God” and that is no doubt true! All spring and summer before, I battled with hip pain and assumed it was from over exercising and playing with the kids while staying home during covid. In the end, it wasn’t bursitis like I had been treated for, but was a site of metastasis.
Thankfully, the pathology from the biopsy of my hip included full genomic testing and I found out about ROS1 very soon after diagnosis. I had 10 days of radiation to my hip right away and started on the full dose of entrectinib. Scans showed a dramatic response just a little over two months in. Unfortunately, the next scan showed progression and it’s been quite a journey since then: reduced dose due to a heart issue, thorocoscopy for re-biopsy with no new information, a consult with Dr. Camidge and at Emory, and lots of scans. Interestingly, amidst all of this, entrectinib at a low dose began to clear some of the spots that had progressed. Over the summer, I received gamma knife alongside carbo for the remaining places of active disease. Just last week, I had my first EVER pet scan that showed no evidence of disease! So, I’ll stay on entrectinib at either 200 or 400 mg and watch.
The journey has been beautiful in so many ways; a shift in perspective and the greatest appreciation of every moment we get. Early on, someone told me to “stay in the present” and it’s still the greatest piece of advice I’ve gotten. In addition to enjoying every moment, I am able to stay positive through my FAITH, friends and family, and encouraging others in whatever they may be facing. I adopted my own battlecry of “Choose JOY” and my local community in Augusta, Georgia came alive in support with rainbows and happiness. Being outside at home or at the beach is the best therapy and I am thankful to be as active as ever (walk at least 5 miles a day). I also love exploring healthy foods, smoothies, and juices. A few months after diagnosis, I found the ROS1ders and felt such comfort and encouragement from just listening during the Meet Ups. I appreciate any short and sweet “nuggets” of inspiration. One of my favorites...
“When you arise in the morning, think of what a precious privilege it is to be alive, to breathe, to think, to enjoy, to love.” -Marcus Aurelius
Michele - I live in Ohio but was shared the link to your story from a friend I worked with in Augusta who knows you. I am 45 years old and 2 weeks ago I was diagnosed with stage 4 lung cancer that is in my lymph nodes. After the full biopsy, I learned just on Tuesday the mutation is ROS1 - and he learned that and connected me to this page - so thankful for connections like this. I am encouraged by hearing from people like you, so thank you for sharing. I too have chosen my mantra, and it is "But God". Just as you mentioned, I am so thankful that I stand on a foundation of faith…