Chordoma Foundation

Videos and key takeaways from the 2019 Chordoma Community Conference

On June 8th, more than 90 patients and caregivers from 21 states gathered in Chicago for our 2019 Chordoma Community Conference at Northwestern Medicine

The conference venue, on the 10th floor of the new Shirley Ryan AbilityLab, provided spectacular views of the city while attendees heard from leading chordoma experts about the latest advances in neurosurgery, radiation oncology, and systemic therapy and connected with others who share similar experiences. Participants also had the opportunity to get their questions answered live during a 90-minute “Ask the Experts” panel and join small-group discussions on quality of life improvement led by pain and rehabilitation specialists.   

Later in the day, attendees also heard from peers, including sacral chordoma survivor Susan Garbett and caregiver Noreen Potempa. Both Susan and Noreen generously spoke about their personal journeys with chordoma, sharing intimate insights about the challenges faced, friendships forged, and lessons learned along the way.     

All of these presentations are now available on our YouTube channel. We encourage you to watch and share them with anyone else you believe may benefit from their content.

Here are five of our key takeaways from the 2019 Chordoma Community Conference:

1. Chicago is a growing hub of chordoma expertise.

Between Northwestern Medicine and the University of Chicago, there is an expanding network of doctors and specialists with experience treating chordoma patients in the greater Chicago area. Experts in chordoma treatment and care can be found at Northwestern Medicine’s Department of Neurological Surgery, Shirley Ryan AbilityLab, and Chicago Proton Center. They include surgeons such as Jean-Paul Wolinsky, MD, and James Chandler, MD, radiation oncologists such as Vinai Gondi, MD and Sean Sachdev, MD and pain specialists such as Misty Kirby-Nolan, APN-CNP. Across town, at the University of Chicago, the Social Neuroscience Lab and Neuro-Oncology department both have experience supporting chordoma patients, with experts like Deric Park, MD who has served as the principal investigator of chordoma-specific clinical trials. 

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2. Recent advances in surgery have dramatically changed the process, recovery, and outcomes for chordoma patients.

Dr. James Chandler and Dr. Jean-Paul Wolinksy both spoke about evolutions in surgical techniques that have benefitted the chordoma community. Dr. Chandler explained how the shift to less-invasive, endoscopic procedures has improved both progression-free and overall survival rates for clival chordoma patients. Dr. Wolinsky explained why en-bloc resections ─ surgeries that remove the entire tumor in one piece ─ offer the best chance of disease-free survival. He also noted that because chordomas occur near vital structures such as the spinal cord, brainstem, nerves, and arteries, a complete resection is not always possible. In these cases, he reminded participants, it is important to discuss quality of life priorities with your doctor before surgery to assess the tradeoffs that may be necessary to remove as much of the tumor as possible while retaining as much function as possible. Dr. Chandler and Dr. Wolinsky both emphasized that chordoma patients are best served when they are treated by an experienced, multi-disciplinary team of specialists at a chordoma center of excellence.    

3. New radiation techniques have enabled us to “land on the green” with much greater accuracy, avoiding damage to healthy cells.

During his presentation, Dr. Vinai Gondi compared the high-priced real estate surrounding chordoma tumors to the 18th fairway of a golf course, with very little room between the “traps” (healthy cells) and the “green” (tumor cells). “Radiotherapy is about inflicting DNA damage on tumor cells,” he explained, “and it shouldn’t just be accurately delivered, it should be broadly delivered [to the entire tumor].” Because chordomas are inherently radio-resistant, they require high doses of radiation to be controlled. That’s why new techniques such as dose-escalated radiotherapy using proton beam radiation have been so impactful because they improve accuracy while limiting unnecessary damage to surrounding cells.    

4. Resources are available to help improve your quality of life during and after treatment.

The afternoon breakout sessions provided a more intimate setting for patients and caregivers to connect and discuss quality of life issues with pain and rehabilitation specialists from Northwestern Medicine and the Shirley Ryan AbilityLab. These free-flowing discussions covered topics such as the management of pain, mobility and functional issues, as well as mental and emotional health, exercise and nutrition. Speakers included specialists in physical therapy, speech-language pathology, urology, occupational therapy, and pain management. They suggested that chordoma patients work with their local doctors to create a plan for managing pain and functional issues and supplement that plan as needed with the help of specialists at chordoma centers of excellence. In particular, they recommended that a palliative care specialist be part of the care plan for chordoma patients from the time of diagnosis, through all stages of treatment, and beyond. 

5. There is a compelling reason to hope.

Our Executive Director and Co-Founder Josh Sommer shared updates about what the Chordoma Foundation is doing to advance better treatments and ultimately a cure. With a focus on the Foundation’s brachyury drug discovery program, the application of cutting-edge science to attack chordoma through epigenetics and immunotherapies, and the growing pipeline of clinical trials, he shared with participants the hope he feels every day knowing that better chordoma treatments are no longer decades away, but are now possible within years. 

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Ask the Experts

What happens if my tumor comes back? What if I can’t have more surgery or radiation? How do I reduce my pain? During the 90-minute “Ask the Experts” panel at the 2019 Chordoma Community Conference, five experts from Northwestern Medicine and the University of Chicago answered these and other questions from patients and caregivers onsite as well as those watching remotely. Topics covered included diagnosis, treatment best practices, pain management, clinical trials, and advances in chordoma research. The session was moderated by Dr. Edward Les, who is both a chordoma survivor and an emergency medicine physician. 

Ask the Experts Panel

  • Jean-Paul Wolinsky, MD | spine neurosurgery
  • Vinai Gondi, MD | radiation oncology
  • Sean Sachdev, MD | radiation oncology
  • Deric Park, MD | medical oncology
  • Misty Kirby-Nolan, APN-CNP | pain management

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We are extremely grateful to our partners at Northwestern Medicine for their hospitality and dedication to helping us improve the lives of those affected by chordoma. Special thanks are owed to Dr. Wolinsky and Hannah Horwood, project manager in the Department of Neurological Surgery, for their time and efforts as hosts and coordinators, which were instrumental in making this unique gathering possible.


International Chordoma Community Conference 

July 17-18, 2020 

Mark your calendars for the 2020 International Chordoma Community Conference in Boston next summer. This biennial event brings together patients, caregivers, and loved ones from around the world to face the unique challenges of chordoma together. The one-and-a-half-day format will offer presentations from leading chordoma experts about the latest advances in treatment and care, practical advice for navigating life with chordoma, support groups, roundtable discussions, social events, and more.

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