I recently attended, for the first time, a two-day regional meeting hosted by the Academy of Oncology Nurse and Patient Navigators (AONN+), which addressed how to implement best practices in patient navigation, survivorship, and psychosocial care; the evolving challenges of program improvement; and the role of personalized medicine. Before attending the conference, I was excited by the promise of learning from other professionals and sharing best practices. I knew in advance what topics would be covered and was excited to come away from the conference equipped with resources that would better serve the chordoma community. But despite knowing what I hoped to gain from attending, what I lacked as a first-time attendee was the ability to speak with someone who had attended previously, so they could reaffirm or temper my expectations.
With the International Chordoma Community Conference (CCC) quickly approaching, I want to offer you the opportunity gain insight from and hear the perspectives of chordoma community members who have previously attended. I asked eight members of the conference organizing committee to reflect on their experiences by responding to the questions outlined below.
You’ll learn about the conferences from the point of view of chordoma patients including Sharon Berlan, Nadine Cordova, Norma Jones, Ed Les, and Adriane Rothstein. The conferences are also a great resource for spouses of patients like Brittany Fuchs, and parents of patients like Chris Jones. Heather Lee, who lost a child to chordoma in 2008, also shares her perspective on her continued involvement in the conferences.
In their responses, you’ll find a range of insights – from practical advice about dressing comfortably to how to get the most out of the time with leading doctors and physicians.
It is my sincere hope that you leave the CCC with your expectations exceeded – that you, like these community members, will be empowered to advocate for yourself, well-equipped with the knowledge to navigate your or your loved one’s chordoma journey, and reassured that you’re not alone.
How did attending a previous conference empower you to become a better advocate for yourself or loved one?
“Armed with the latest information about chordoma and protocols for treatment, I have the confidence to meet a new doctor and discuss my chordoma in a knowledgeable way, which has garnered respect from the doctors I meet.”
“By hearing other people’s experiences at a previous conference, I learned to ask better questions and politely, but firmly, hold doctors accountable to answer specific questions.”
“The CCC events do a fantastic job of teaching navigation skills, which enable patients to do proper research particular to their own situations and allow them to make informed decisions regarding care. It’s particularly liberating to know that it’s perfectly OK to ask for second, third, or even fourth opinions, whether you are dealing with your primary care doctor, neurosurgeons, or radiation oncologists. And, it’s awesome to know that the Chordoma Foundation always has our backs. The Foundation is such an incredible advocate for us – in driving research forward, in developing best-practice care plans, and connecting patients to both each other and to a rich and growing trove of resources.”
What advice would you give for those attending a conference for the first time?
“Don’t miss the “Ask the Experts” session. You get to meet some of the talented physicians and researchers who are on chordoma’s case to get a glimpse of the cutting-edge research and treatments being developed.”
“Doctors won’t be able to thoughtfully answer your personal medical questions without having your full medical history, so please avoid the urge to ask for a ‘curbside consult.’
Also, read the glossary of medical terms in the back of the Expert Recommendations booklet, as the medical vocabulary can be difficult to understand. Being familiar with terms helps make the expert talks more understandable.”
“Align yourself with others with the disease. Even if you’re feeling shy, step out of your comfort zone, because you will meet lifelong friends who completely understand your disease and how you’re feeling.”
How were you inspired to take action after attending a conference?
“The financial burden can be heavy for those facing chordoma. Like most people impacted by chordoma, our family exceeds our medical deductibles every year. With that said, we recognize that the path to a cure isn’t free. After attending a conference, we were inspired to give up the things we could do without—like paid TV programs—and donate that money toward helping the Chordoma Foundation find a cure.”
“I have been to all but two of the conferences and continue to learn how to better advocate for myself. I’ve been encouraged to raise questions with doctors, find more information about clinical trials, and seek other opinions. Personally, I spread the mantra to keep seeking other options even when you’re being told there are none. I’ve also been inspired to fundraise for the Foundation and share its successes with others in the community. We can all be inspired to interact more with CF and other patients, to share and to learn, and experience the wonder of meeting each other and not feeling so alone.”
What is your favorite memory from a previous conference and why?
“My favorite memory is perhaps from the very first conference, where I had the privilege of meeting the people who have become very close friends. It was amazing, and our friendships have deepened over the last nine years.”
“My favorite was when our son Justin (1995–2008), who had recurrent clival chordoma and was 12, spoke to the doctors at the research workshop in 2008 and then again at the first community conference the next night. Justin told them how close he had become to CF Executive Director Josh Sommer. He thought Josh would win the Noble Prize, and then used a sports analogy to tell the doctors that they needed to work as a team and collaborate to cure the disease.”
“A primary goal of the second Chordoma conference held in Bethesda, MD was to integrate the community, in addition to learning the facts and listening to the experts. To this end, we were all asked to bring a small token or gift as an example of our home state. It still puts a smile on my face to remember the reactions I received when I passed out numerous packages of grits to everyone who had no knowledge of this wonderful Southern staple. It started a lot of conversation and the gatherings were enlivened.”
What are you most looking forward to learning at the upcoming Chordoma Community Conference on July 16?
“Given so many globally recognized chordoma experts will be presenting, I’m super excited! I’ve not had the privilege of being in the presence of so many at one time. I’d also like to hear firsthand what the next set of goals are for the CF.”
“I am most excited to hear about new biological discoveries that can lead/have led to better drug therapies.”
“I look forward to the presentations and Q&A panels. Recently, there has been much discussion on the Survivors Facebook group regarding biopsies, and this is always a hot topic, so I’m looking for some latest recommendations. Also, more knowledge on genetic testing is needed so patients don’t lose the opportunity to save tissue for that as well as donating to the CF. Looking forward to learning about immunotherapy and the latest news from clinical trials.”
What keeps you coming back to conferences?
“I come back because my husband, Todd, and I want to remain up-to-date about everything that is out there on chordoma and this is the best place to do so. We also value the connections we make with others in the community.”
“The Chordoma Family! I love seeing everyone face-to-face – it makes it more intimate than just posting on Facebook or other support websites. I take advantage of this opportunity to see old friends and meet new ones. It’s the one place I can be myself and be honest about my disease. NO JUDGMENT. Just love and support!”
“I come to meet old friends, make new friends, and reconnect with those people who I supported and those who helped carry me through the rough times. I come to be renewed, enlightened, and filled with hope for all through communication, conversation and information. I always benefit from attending and have been to all.”