Chordoma survivor and advocate Susan Garbett gave an impassioned talk during our Chordoma Community Conference at Northwestern Medicine in Chicago in June 2019 about her journey with chordoma and what it means to her to serve as a Peer Guide, helping other patients navigate this path. The self-described optimist shared the story of her chordoma diagnosis and treatment and explained the incredible and unexpected impact of donating her tumor tissue to chordoma research. We’re so grateful that Susan is doing well and continuing to lend her time, her compassion, and her perspective to all of us in the chordoma community.
Watch Susan’s powerful story and read the full transcript of her remarks below.
I am honored to have been asked to speak to you this afternoon. We all have stories, whether you are newly diagnosed, in the throes of treatment, or a long-term survivor. Many of you have heard my story since it was featured as part of last year’s Chordoma Foundation’s fall appeal. I will try to give you the condensed version, but as most of you know there are no short-cuts when it comes to chordoma.
My journey began at the Mayo Clinic in Jacksonville in 2009, where my husband Chuck and I went for a routine rheumatology evaluation. We never did talk about rheumatology. Rheumatologist, Dr. Kenneth Calamia said, “They found something on your MRI. It’s a sacral chordoma, a very rare malignant bone tumor.” I said, “I know what malignant and tumor mean, but how rare is this?” He answered, “ONE IN A MILLION!” That’s when I felt Chuck squeeze my hand.
The next day I had an appointment with Dr. Mary O’Connor, an orthopedic oncologist, where we learned my problem had been misdiagnosed in Sarasota. What three doctors thought was a perineural cyst turned out to be a baseball size tumor on my sacrum, which in comparing my previous MRIs had doubled in size over the past year. I was told surgery was the best option for me, and I would need a team of surgeons for this complicated operation. Both an anterior and posterior approach was recommended, which meant going in from the front on one day and a couple days later going in from the back. Then came the real kicker. “There is a good possibility you will lose bowel and bladder function.” I remember Dr. O’Connor’s words like it was yesterday, “Susan this is a big deal!” I tried to hold back the tears, unsuccessfully. The biopsy confirmed the diagnosis.
I knew I needed to better educate myself with this unfamiliar term that had suddenly turned my world upside down, in order to make informed decisions. As soon as we began researching, the Chordoma Foundation’s website came up. Even ten years ago it provided us with invaluable information and gave us a better understanding of what chordoma is, who could be affected, the types, their location and risk factors. Trying to digest it all was difficult and at times unsettling, realizing there are only 300 cases in the US a year. The Foundation strongly encouraged patients to seek multiple opinions. Their Doctor Directory of chordoma specialists became our focus because it gave us the tools to help us find qualified care.
We diligently spent time doing research as to where to go for the best possible treatment. It was a lengthy process, but well worth our time and energy. Chuck and I were fortunate. We were retired, no children living with us, no jobs to rearrange, and financially we had the means to travel to receive the best care.
I’m from Baltimore, so naturally, Johns Hopkins was first on my radar. That is where we met Dr. Jean-Paul Wolinsky. I expected to see someone wearing a beret, not cowboy boots! We sat down and Dr. Wolinsky in a gentle voice said, “I know more about you than you know about me. What would you like to know? I’ll be happy to answer any of your questions or go over anything you need clarification on.”
He immediately made us feel comfortable, and I proceeded to ask the list of questions I had brought. Dr. Wolinsky answered them one by one, always giving me time to digest what he was saying. Chuck and I were familiar with his stellar credentials, and his answers just supported this confidence he projected.
He told us they had found their surgeries are usually more successful and with fewer complications by going in only from the back. That meant only one surgery instead of two. I was thrilled by that news. Dr. Wolinsky continued explaining some pretty concerning stuff, but his compassion, concern, and calming manner helped melt away some of my anxiety.
I have been given a gift, something I don’t take for granted. After a nine-hour operation, my tumor was completely resected in one piece, preserving the nerves that control bowel and bladder or my life would have been totally different. I no longer have a tail bone, most of my sacrum, or the S4 and S5 nerves. Like many of you, my road to recovery was very long and challenging, filled with emotions, a few potholes and detours, a lot of physical therapy and pain management, with many small victories along the way. I am so grateful to Dr. Wolinsky, my fabulous medical teams, my husband, children, family and friends whose love and support was overwhelming. The final pathology report from the Hopkins Tumor Board showed a chordoma with negative margins of dedifferentiated chordoma, a more aggressive tumor.
Seven months later, we were in Boston for Proton Beam radiation treatments at Massachusetts General Hospital, under the extraordinary care of radiation oncologist, Dr. Norbert Liebsch. My husband and I feel so blessed to have been able to stay at the American Cancer Society’s Astra Zeneca Hope Lodge in Jamaica Plain, a suburb of Boston. During our two month stay, we met fascinating people from across the US and a few from other countries. Guests and caregivers rapidly became family. When people with similar situations are thrown together in a place where they never imagined they would be, the veil of privacy separating us just naturally seems to come down. There was a story behind every guest’s door. Everyone got to know each other quickly, as we talked about ourselves, our families, jobs, past lives, and our dreams. Some willingly shared their trials and tribulations, while others remained silent.
The oddest thing was, except for those who continually wore hats or scarves, most of us looked just like anyone else you might pass on the street. Passersby never saw the havoc cancer had caused inside many of our bodies, or the internal mental struggles several of us were quietly wrestling with.
Leaving the Lodge after 35 treatments was bittersweet. Yes, we were elated to finally be going home, but saddened to leave the friends we had made during those past months. We are still so grateful to the American Cancer Society, and to the many organizations, students, and volunteers who made donations of food, staples, dinners, and entertainment, making our stay more pleasurable. I can honestly say our two-month stay at Hope Lodge was one of the most amazing and rewarding experiences we have ever had together.
At one of my follow-up appointments with Dr. Wolinsky, we had the pleasure of meeting Dr. Alfredo Quiñones-Hinojosa or Dr. Q for short, a neurosurgeon, who performed over 200 brain surgeries a year while at Hopkins, and now is at the Mayo Clinic in Jacksonville. At Hopkins, Dr. Q led a team of 25 scientists who were trying to understand and unlock the mystery behind the development of chordoma. He enthusiastically told us his team had successfully developed a chordoma cell line from my resected tumor after 5 years of trying. And the most exciting news is — this cell line will continue to grow indefinitely!
I left Hopkins that day feeling so energized, my feet were barely touching the floor. I couldn’t believe that just by signing my name on a release form that allowed my tumor tissue to be used for research, other people with chordoma might actually benefit. It’s amazing what these scientists are doing to find a cure, and I feel so grateful to be a small part of it.
Our guide, Sagar Shah, who is now doing a postdoctoral fellowship at Cornell University, gave us a tour of Dr. Q’s lab. I was able to see my cells under the microscope, hold a mouse injected with my cells, and learn about their amazing research. We met many of their remarkable team, and it was then I realized I was old enough to be their grandmother! SOBERING! Today my cells are being used by researchers in labs and institutions in the US and around the world.
And it gets better! Recently, the findings in a paper published in the journal Nature Medicine offered the strongest evidence yet that brachyury is the driver of chordoma, which opens the door to new treatments for this rare tumor. Josh Sommer sent me the article as soon as it was released. I admit much of the study was way over my comprehension level, but I did see my cell line was used as part of this huge study.
An email from Dr. Charles Lin at Baylor University, and a major contributor to this study, said the following:
“In your cell line, the DNA in and around the brachyury gene has been copied many times. The size of these copies was one of the first clues that we found suggesting that parts of the DNA that turn brachyury on were very important in chordoma. I think it’s fair to say that without your cell line, we would not have come to the same conclusions that we did in the study.”
It doesn’t get any better than that!
Most donors rarely get to meet the scientists who are using their tissue in their research. I have been fortunate to have met several, including Dr. Andrienne Flanagan, from University College London Cancer Institute, who stopped me in the hallway at the 2016 International Conference in Boston and told me she was using my cells in her research. I find all of this absolutely mind-boggling!
I have been so impressed with the Chordoma Foundation and how it has evolved and what it has accomplished in the twelve short years of its existence. They have an incredible staff, although few in number, they are a powerful team dedicated to improving the lives of those affected by chordoma, while always working diligently to help find a cure. I wanted to find a way to give back. Making an ongoing monthly contribution as part of their Perseverance Pledge agreement was one way.
Another opportunity came in 2016 when I was asked to be on the Community Advisory Board, which advises the Foundation’s staff and Board of Directors on a range of matters, ensuring that everything they do supports patients and their families in the best possible way.
I have been a monthly support group facilitator for the Alzheimer’s Association for the past 11 years. When the opportunity arose to be trained by the Chordoma Foundation to be a Peer Guide for those people wanting to talk to a chordoma survivor, one who has been through it and knows what it’s like, I was all in. Being a Peer Guide since 2016 has opened a whole new avenue for connection with other sacral patients and is one of the most gratifying things I do. I don’t give medical advice. My role is to be an active listener, give support, and help guide people through their journey by familiarizing them with some of the resources that are available. I have met such intriguing people from across this country and one from Australia, through phone calls, emails, or texts. Some connections last until their treatments are over, others last much longer. My peer partner in California and I have been connecting for over 3 years. He once told me he considers me a part of his medical team. I was overjoyed by his comment. You can’t imagine how emotional you get from emails like this one I received:
“I’m so grateful to you for the warmth and experience that you shared with us during an overwhelming time. I love you very much for being willing to pay it forward and give that to me and my family.”
Chuck asked me once if I ever get depressed after these phone calls. My response was “NEVER”! I feel more grateful for the gift I was given each time I hang up.
Now: a final anecdote. While undergoing radiation treatment, Chuck and I often stopped by the 8th floor of the Yawkey Cancer Center at MGH, while waiting for the shuttle back to the Hope Lodge. It was a place to unwind, get information, use their computers, take a class, or relax through artwork. They had an entire wall of books and DVDs about every kind of cancer you could think of, but not even a printout about chordoma. It was then I decided if I ever got through all of this, I would attempt to write a book, since there wasn’t much out there about chordoma. In 2014, Confronting Chordoma Cancer: An Uncommon Journey was published. On the back cover I wrote:
When you hear “very rare cancer…” and you find yourself in a place you never thought you would be, when the fear sets in, when unwelcomed challenges are directly in your path, when obstacles and burdens become harsh; we still have the ability to regain control, and fight to help ourselves through all that lies ahead, by focusing on the power of the human spirit and hope.
A reader wrote:
“We’ve all read your book since Mom’s diagnosis and found it to be warm and informative. You did a great job of humanizing everything and the book really shined a light into the darkness for me personally.”
I want to leave you with a poem by Maya Angelou that resonates with me even before I was diagnosed.
You may encounter many defeats,
But you must not be defeated.
In fact, it might be necessary
to encounter defeats,
so you can know who you are,
what you can rise from,
how you can still come out of it.