I remember the day Monica first called. It was early January, and she had recently learned that the clival chordoma she overcame as a child more than 20 years prior had returned. An MRI confirmed that the tumor was wrapped around her brain stem, and it was beginning to cause worrisome symptoms that had her scrambling for medical advice and treatment. Instead of enjoying the holiday season with her husband and three young daughters in their new home, Monica had been in and out of hospitals trying to find a solution.
Like so many others impacted by chordoma, she was confused by what her doctors were telling her and wanted to better understand the choices available. Surgery was necessary, they explained, and would be risky.
While Monica expected the risk, she did not expect to have such a hard time finding a qualified medical team to treat her. In the few weeks following her diagnosis, four separate doctors had declined to treat her because none of them felt they could safely perform the surgery she needed. So when a fifth surgeon finally agreed to take on her case, Monica signed up despite the fact that he rated her odds of success at 50 percent, and recommended a highly invasive procedure that could create new deficits.
Unsatisfied with her options and overwhelmed with questions, Monica and her husband sought answers on their own. With little memory of her childhood experience, they turned to the internet for ideas. An early search brought them to our website, where they discovered our Patient Navigation Service. They immediately got in touch, which is when I spoke with Monica for the first time.
Monica was scared, but hopeful. We talked about treatments, physicians, and care logistics, and I provided her with contact information for members of our Doctor Directory. Within days of our first conversation, she had connected with doctors at both Massachusetts General Hospital and the University of Pittsburgh Medical Center (UPMC). With their guidance, Monica called off her surgery days before it was scheduled to take place, and opted for a less-invasive procedure with a higher chance of success.
Over the weeks leading up to her new surgery date, we spoke and emailed several more times. Monica called to ask questions about lodging and travel assistance, find information on insurance appeals, and sometimes just to talk through her concerns. Monica flew to Pittsburgh for surgery in March. I was anxious to hear from her following the surgery, and I sent her a few emails to let her know I was thinking of her. One afternoon I got a phone call from a familiar number, and on the other end was Monica — her voice sounding a little tired and pained, but sharing incredible news. Her neurosurgeon, Dr. Paul Gardner, had not only been able to remove her entire tumor, but also the calcified remnants of her childhood chordoma. Monica could go home to her girls and start follow-up radiation in a few months.
Now home and recovering, Monica remains in touch. She’s mapping out her follow-up care, and sharing her journey to help other patients and family members stay motivated.
About the Patient Navigation Service
Monica is just one of the more than 450 patients we’ve assisted through our Patient Navigation Service (PNS) since we launched it in 2015. Every story is different, but they all begin the same way – with the search for information and advice from someone who understands chordoma. In all, we’ve helped individuals in over 37 countries overcome the medical, emotional, and practical challenges posed by this disease, and connect with doctors and specialists experienced in chordoma care.
Map of patients supported through our Patient Navigation Service from April 2015 through May 2016.
Some examples of the assistance we provide include:
- Answering questions and explaining important concepts about chordoma and treatment options.
- Facilitating referrals to experienced physicians and treatment centers.
- Identifying and providing information about clinical trials for which a patient could be eligible.
- Recommending home health services, medical equipment suppliers, and other relevant vendors and service providers.
- Providing information about programs and organizations that offer travel and lodging assistance, co-pay relief, and other benefits.
- Supporting requests and appeals to insurance companies.
- Connecting patients and caregivers with others who have been through a similar experience
How to get in touch
I came to the Chordoma Foundation in 2014 for the express purpose of building and managing a suite of services to help improve the lives of chordoma patients and caregivers. With more than 10 years of experience in social work and education, and a passion for patient advocacy, it is both my job and my privilege to serve the chordoma patient community.
At the Foundation, we believe everyone affected by chordoma deserves to have somewhere to turn for advice and guidance. Understanding the treatment options available and making fully informed care choices can have a significant impact on a patient’s overall outcome and quality of life. Quite literally, it can mean the difference between a chance at being cured and suffering through a long battle with the disease.
If you or someone you know needs help, I hope you’ll reach out. I personally respond within 48 hours to everyone who reaches out.
Contact me at:
- Phone: (888) 502-6109
- Email: firstname.lastname@example.org
- Twitter: @ChordomaFDN
- Facebook: facebook.com/chordomafoundation
In 2016, the Patient Navigation Service supported another 400 individuals, and the demand for this service continues to grow. We are currently seeking additional contributions and volunteers to sustain this important new program, and ensure that patients like Monica get the care they need. If you’d like to support this program, please contact us or consider making a gift online.