Part one of Lindsay’s Uncommon Story, published in 2013, can be found here.
In May 2003, I woke up to blurry vision, headache, and numbness in my hand. My doctor ordered an MRI to “put her own brain at ease.” She told me it may be something like multiple sclerosis, to try to keep me calm. She got the results the Friday before Memorial Day, but didn’t have the heart to tell me and ruin my long weekend. She called me the following Tuesday, and I’ll never forget hearing: “It was a good thing we did that MRI after all. You have a mass in your brain and we already know it needs to come out.”
I saw four neurosurgeons over the next four months who all suggested different approaches and different potential diagnoses. Two even declined to operate. It was a fateful meeting with a renowned radiation oncologist who was confident I had a chordoma.
This, in turn, led me to Drs. Sen and Costantino. I had two surgeries in 2003: a bi-frontal craniotomy and a posteria fossa craniotomy six weeks later. They were successful and got the whole tumor out. For protection, Dr. Liebsch recommended I have proton beam radiation in Boston, which I underwent in 2004. I’m grateful to have had an exceptional outcome.
Since then, I got married in 2010 to my husband, Brad, and went on to have my daughter Hadley in 2012 and my son Carter in 2018. I had some fertility issues, but was able to have my children with the help of a reproductive endocrinologist. I had sinus surgery with Dr. Costantino in 2011 before my procedure to have my daughter, as I had a lot of sinus fungus buildup. I had some double vision for 10 months following my initial surgery, and occasionally see a neuroopthalmologist. I am seeing also seeing a neuroendocrinologist for mild hypopituitarism from my chordoma treatment, and have had a followup sinus surgery and cranioplasty to deal with side effects. And most recently, in October 2021, I had the titanium plates, mesh, and screws removed from my forehead area, as they were starting to protrude through my skin, and had eroded tissue and muscle.
As a long-term chordoma survivor, for me, it was important to go on with my life and not let this disease define me. I have volunteered some time to the cause, and occasionally scan the Facebook group, but it is not a central theme in my life. I don’t worry about recurrence or side effects on a daily basis. Life is too short for that.
But it’s important to stay vigilant and get the followup scans. And if you see something, say something, and advocate for yourself. I felt the titanium in my head causing pain and tenderness a decade ago, and my care team told me not to worry about it. I wish I had been more insistent on ordering imaging studies to explore what was going on. The reality is, the medical community doesn’t know what it doesn’t know. They haven’t been doing this type of surgery or radiation for 50 years. They learn things along the way. For example, at time of radiation, my oncologist insisted that if I need growth hormone replacement as an adult, that I should find an endocrinologist who will prescribe it even though it’s controversial. Ten years later, he changed his recommendation as it may have been a factor in a patient’s recurrence.
I would encourage medical providers to listen to patients, and take seriously what may seem like minor concerns. Patient feedback is a gift: it leads to learnings, improvements, and innovation. When I had my cranioplasty to remove my titanium, Dr. Costantino asked me how the patient experience was at the hospital, and I was so happy he did. It shows caring for the whole patient, because comfort and care matters.
Community has also been important to my journey. If it were not for the online MSN Chordoma group (pre-Facebook, 2003) I would not have learned about the world-class physicians and experiences that have led me to where I am today. As a lay person, I was distraught that five different surgeons had shared vastly different opinions and I had to make such an important decision myself. I’m amazed by the Chordoma Foundation and how quickly it has grown to be a comprehensive resource for patient services and research. It’s so important that long-term survivors stay connected and share their experiences to help future patients.
It’s also important to share your story, because it gives people hope. When I awoke from my first surgery, I was immediately told I’d have to come back in six weeks for another one. It crushed me, and initially I refused. My doctor put me in touch with a patient who told me about her own ordeal, and I learned that while it may be a bumpy road, it could turn out okay. I paid that forward years later and helped another patient find the courage to have the daunting surgery. We are all human; our stories give hope and are important.
If I were to offer some advice to a patient who’s wondering what may lie ahead in their survivorship journey, I’d want them to know that there are long-term survivors who have gone on to lead healthy, fulfilling lives — and who may never have a recurrence. I’d advise them to stay on top of specialist appointments to follow any side effects, and do not worry about statistics that vary widely. If you see something, say something: report it to your care team and listen to your gut.
As a long-term survivor, I’ve dealt with survivor guilt. Sadly, several chordoma patients I’ve met along the way, who helped me, have passed away. I’ve thought, “why am I so lucky? Should I be here?” I can’t answer that — no one can — but I consider life to be a gift and try to live it to the fullest every day.
I also support the Chordoma Foundation as a donor. Chordoma is a rare disease, and in the short time the Foundation has existed, so much ground-breaking research has been conducted that has helped the medical community learn about how to better treat chordoma. I’d like to think that in my lifetime, a cure will be found. It’s a unique disease with unique needs — and if we don’t support it, who will?
Your journey doesn’t end when treatment ends, and neither does our support. Our Survivorship Initiative offers resources specifically tailored to address common quality of life issues, and can help you find the care and support needed to live the fullest life possible.