Our 2018 International Chordoma Community Conference in Boston brought together more than 100 patients, family members, doctors, and researchers from 7 countries to learn about the latest advances in chordoma research and treatment, share insights and experiences with one another, and make lasting connections with peers.
In addition, we had more than 50 people join us via live stream, to watch the conference throughout the day. Videos of the conference sessions are now available on our YouTube channel.
As you watch the videos you will have the opportunity to learn from more than 20 research, treatment, and patient care experts – as well as fellow chordoma survivors. We think you will particularly enjoy the Ask the Experts session, featuring a panel of leading chordoma doctors, and closing remarks from Ed Les, a chordoma patient and member of our Community Advisory Board.
You can watch the whole conference on our YouTube channel, or pick and choose individual sessions from the playlist. We encourage you not only to watch the videos, but also to share them with family or friends who may be interested. Below are some highlights from the conference sessions, along with the videos where you can find them.
Recommendations for treating recurrent and advanced chordoma
“When you get recommendations from doctors, walk out with as much information as you can. It is harder for doctors to talk to each other but you can share the information directly.”
— Chris Heery, MD, Bavarian Nordic
Medical oncologist, Dr. Chris Heery, and chordoma patient, Bill Dorland, PhD, discussed best practices for treating recurrent and advanced chordoma, the importance of the doctor/patient relationship, and the necessity of advocating for yourself as a patient. Dr. Heery has treated numerous patients experiencing recurrences and, as a patient, Bill has navigated treatment for multiple recurrences.
Until recently, there were no guidelines for how chordoma recurrences should be treated. But in 2017, the Chordoma Global Consensus Group published recommendations for treating recurrent chordoma in the medical journal, Annals of Oncology. Dr. Heery encouraged any patient dealing with a Tumor that has grown back after initial treatment. Recurrences can be isolated or multifocal, local or regional. to learn about these recommendations, and then get multiple opinions on how to approach treatment. Each patient’s situation will be different as far as how the guidelines are applied, in large part because of what treatments a patient has already received. Treatment options for recurrence may include high-dose or low-dose radiation, surgery, ablation therapies, clinical trials, The practice of prescribing drug treatments that are not approved by government agencies to treat a particular disease. Doctors are allowed to prescribe drugs off-label if they believe it is in the best interest of the patient. systemic therapies, or even watching and waiting.
Bill encouraged fellow patients to take their time when making treatment decisions for recurrence. “When I started out, I thought wait and see was terrible and it was hard to bear … I’ve gotten really good at wait and see. It’s not always the best thing to do, you have to talk with your medical team, but it can work … The way to remember it is, it’s right there in the name – be patient. You are a patient, so be patient. It takes time for these things…to become clear, what the right strategy is.”
Ask the Experts
Chordoma experts answered patient and caregiver questions on diagnosis, treatment best practices, and advances in chordoma research during a panel session that was moderated by Dr. Edward Les, who is both a chordoma survivor and an emergency physician. Questions from the chordoma community were submitted in advance and live questions were taken from conference attendees.
The panelists included:
- Yen-Lin Chen, MD – Massachusetts General Hospital
- Thomas DeLaney, MD – Massachusetts General Hospital
- Adrienne Flanagan, MD, PhD – University College London
- Paul Gardner, MD – University of Pittsburgh Medical Center
- Ziya Gokaslan, MD – Brown University
- Chris Heery, MD – Bavarian Nordic
- Shreyaskumar Patel, MD – The University of Texas MD Anderson Cancer Center
“Both surgeons and radiation oncologists should really be involved in the decision making and then they need to make that decision jointly.”
— Ziya Gokaslan, MD, Brown University
The panel got started with a question about whether any chordoma cases should be treated with surgery alone, without radiation. The experts agreed that there is no one right answer to this question and that each patient’s situation needs to be evaluated independently. Dr. DeLaney stressed the importance of trying to “do everything to control the tumor at the initial treatment and then … weigh the risk of recurrence against the morbidity of radiation therapy.” This was followed up by Dr. Gokaslan’s comment above that the patient, their surgeon, and their radiation oncologist should always work together to determine the best treatment plan.
“You cannot treat a child if you haven’t been trained to treat children. If you don’t have one person that is both [a chordoma expert and a pediatric expert], you need to have two people that are willing to work together.”
— Chris Heery, MD, Bavarian Nordic
There was a lengthy discussion about treatment for pediatric patients, sparked by a question regarding whether pediatric chordoma patients should be treated by a doctor who has experience with chordoma, or a doctor who has experience with pediatric patients. All experts on the panel agreed that to achieve the best possible The health condition of a person after being diagnosed and treated for a particular disease. Outcome is usually measured at different time points. For example: one-, five-, or ten-year outcome. when treating pediatric chordoma patients a team of experts is required. A chordoma expert and a pediatric specialist must work together to plan any treatment for the patient. Dr. Heery commented that “children are not little adults, they deal with things completely differently.” Dr. Gardner affirmed that “you have to find a team that works together. The child would not do as well without that.” And Dr. Patel shared that “a good doctor will admit that they need a partner.”
“Experience treating chordoma is important for radiation, just as in surgery.”
— Thomas DeLaney, MD, Massachusetts General Hospital
Radiation was also a popular topic of discussion for the panel, beginning with a question about the rationale for pre- and post-op radiation. Dr. Chen shared information about how radiation given before surgery can help control Tumor cells deposited along the path of a biopsy needle or left in areas around the tumor during surgery, which will eventually grow into tumors. Seeding is a major concern for chordoma tumors and care should be taken to prevent it., and that she and her colleagues are beginning to use this approach more often with certain patients. In the comment above, Dr. DeLaney made note of the importance of a radiation therapist’s chordoma experience.
To see answers to more questions including discussions about levels of radiation, molecular profiling, chordoma subtypes, clinical trials, and benign notochordal cell tumors, watch the full Ask the Experts panel video »
What does survivorship mean for me?
“Anxiety before scans is normal and can be hard. Don’t feel shy about expressing those feelings to your doctor, they want to help.”
— Yen-Lin Chen, MD, Massachusetts General Hospital
Dr. Yen-Lin Chen, a radiation oncologist and member of the Cancer Survivorship team at Massachusetts General Hospital, led a breakout discussion about survivorship and quality of life for chordoma patients. She started the session by defining survivorship as “the act of surviving” and commenting that “survivorship is much more than that. You have to care for the patient as a whole being.” This involves treating emotional wellness, fatigue, anxiety, pain, and more. She stressed that it is important for patients to talk with their care providers about any symptoms or side effects they are experiencing, so they can get relief. In the case of emotional stress, this may include expressing their feelings through exercise, art, or music and she shared some beautiful examples of artwork her patients have given her. She shared that “art is such an amazing way to channel and create wellness.”
To learn more about the challenges of surviving chordoma, watch the “What does survivorship mean for me?” video ».
“We didn’t get to choose this road. The road is hard, sometimes lonely. We do get to choose how we make the journey. We do get to choose how we respond. For all of us chordoma warriors – we all have our issues, our challenges – but we choose to keep on swimming and going forward.”
— Ed Les, chordoma patient and member of CF Community Advisory Board
Dr. Ed Les is a chordoma patient, was an inaugural member of the CF Board of Directors, and is a current member of the CF Community Advisory Board. Ed closed out the day with an emotional and impactful presentation. He shared a collection of his favorite quotes and how they relate to his personal experiences with chordoma, and he called on the chordoma community to continue contributing to research to advance the search for a cure. There were both laughter and tears as he shared how chordoma rocked his world to the core and began with his wife prevailing upon him to get an A type of imaging scan that is used initially to help diagnose chordoma, as well as during follow up to check for recurrence or metastasis. when the pain in his neck persisted for several years. His journey with chordoma has included multiple recurrences, multiple surgeries, and multiple systemic therapies. He stressed that “in every person a cancer diagnosis is a different thing” and that everyone gets to choose how they respond. Ed has chosen to “keep on swimming and going forward,” and he expressed his hope that others will join him and the Chordoma Foundation in persevering in the fight against chordoma.
To learn more about Ed’s journey with chordoma, watch the closing remarks from the 2018 International Chordoma Community Conference »