We’re honored to bring you this Uncommon Story from Adriane Rothstein, a 15-year chordoma survivor who’s been a driving force within the Foundation’s patient community from the very beginning. Her boundless dedication to connecting with and supporting others facing this disease earned her our Uncommon Action Award in 2016. Adriane is a donor as well as an engaged volunteer: she’s been a Peer Guide for over a decade, contributed important knowledge to our Doctor Directory, and helped shape what became our Patient Navigation Service. Here, she tells her chordoma story in her own words, where her gift for sharing her wisdom with others shines through yet again.
First and foremost, I want to say this before anything else: We are more than our cancer. We come to this experience with more knowledge than at any other time in history. No one can guarantee we will be free from a recurrence, but we can shape our experience. My identity is not as a cancer patient, but rather I define myself as an educator, mom, and advocate.
My chordoma story began when, at the age of 47, I saw a new general practitioner for what was a long overdue visit about recurring sinusitis. He immediately remarked if it was recurring, we should take a deeper look even though I did not have any chordoma-like symptoms. I am forever grateful for his insight. A week later the nurse called to tell me an appointment with a neurosurgeon had been scheduled. I remember my words: “Excuse me? Can you back up? Why?” To which she replied “I’m so sorry, the doctor will call you.” And he did, two minutes later. That was January 14, 2007.
Three weeks later, on February 7, I had a partial resection at USC with Dr. Martin Weiss who had seen his fair share of chordoma patients in his 30 years of practicing skull-base neurosurgery. In the hour and a half he spent with my husband, brother and me a week before surgery, he told us the tumor was too large to say whether it was a pituitary tumor or chordoma. His comment: “Let’s hope for pituitary.” I was in an expert’s hands and yet terrified. (Remember, in 2007 the Foundation was in the process of obtaining its 501(c) (3) status.) As well, Dr. Weiss emphatically warned me against consulting with Dr. Google which made me laugh and which I disobeyed much to my chagrin. Fast forward after a full recovery from surgery when I began proton beam therapy (PBT) with Dr. Lila Loredo at Loma Linda University. I found her and her staff to be well versed in PBT chordoma treatments. Loma Linda was the first hospital in the USA treating patients with proton beam radiation.
In 2022, it was unclear if I had a recurrence. Dr. Weiss had long since retired so I spoke to three experts in clival chordoma - Dr. Raza, Dr. Gardner and Dr. Sen. All three agreed something was amiss. Dr. Gardner performed my surgery in November and I now see him and Dr. Snyderman at UPMC in Pittsburgh every year. All is well - the smaller issues were resolved.
After living with chordoma for 17 years, I hope as you begin this journey with chordoma you might frame it as the next chapter in your life rather than the final one. I am so thankful for my husband Mark, daughter Anna and the expertise of all the medical professionals who have crossed my path over the years. We are so thankful for the creation of the Foundation, its resources, experts, support groups and now a research lab. We were just a fledgling group of 60 at our first international chordoma community conference in 2007 and look at us now: a world-renowned organization, a staff of nearly 20, a medical advisory board, a patient support department (not just one person, our beloved Shannon) and the list goes on. I am especially thankful for Josh whose vision, commitment and talent will help us find a cure for chordoma.
Stay strong!
Adriane
