I was told that I have chordoma by a surgeon in the hospital. In the six months of tests and explorations prior to surgery it had never been mentioned as a possibility – it was completely new to me. The surgeon was not an expert in cancer and could tell me little more than that it was very rare (20 or 30 a year in Canada) and that the tumor had consumed most of my L5 vertebrae. He shared that chordomas are cancerous tumors that grow on the bones of the skull and spine and his understanding was that they don’t easily metastasize. He told me he was referring me to a surgeon in Vancouver who had experience with chordoma removal and that my care would be transferred there.
That was my introduction to chordoma. I began to process the information that I had a rare cancer early in the morning while I was in a recovery ward on morphine. I did what anyone else would do when faced with limited resources; I used my smartphone to google “chordoma”. The site that was listed first promised “Chordoma at 38% off”. This seemed odd, and likely not helpful. The next two sites highlighted “Chordoma – survival rates!” Quick glances showed that the survival rate after diagnoses was either 6 or 7 years. This was not encouraging, but of course was also entirely without context – survival rate from what point? I tried not to think about that and looked further down the list. I found a link to the Chordoma Foundation (www.chordomafoundation.org) and began to get some good, easy to read information. The Foundation is an excellent resource for anyone diagnosed with chordoma or who knows someone with it. It was a great place to begin to learn about this disease. In addition to great information, the foundation raises funds for research, organizes some clinical studies and provides resources for those with chordoma.
After leaving the hospital, my wife had spent the night researching chordoma. One of her first lessons was in how poorly understood chordoma is. As she was leaving the ward after being told by the surgeon that they had found a chordoma, she ran into an acquaintance at the elevators. He is a highly trained health care provider at the hospital and asked how the surgery had gone. When Olivia told him about the diagnosis he replied, “Oh, that’s great – that’s benign”. He is a well-respected professional so she trusted him and shared this with a few other people before she got on line and realize that that it was wrong. We subsequently read and were told many things about chordoma that are inaccurate or just false. It took us some time to find sources of trustworthy information. In addition to excellent information from the Chordoma Foundation, and the National Organization for Rare Diseases (http://rarediseases.org/rare-disease-information/rare-diseases/byID/1142/viewAbstract), she came across a private (closed) Facebook page for Chordoma survivors and their caregivers. Olivia was on it for a month before I joined. I wish I had done so earlier. I have been absolutely amazed at what a great resource it is and how supportive it can be for anyone dealing with this cancer. It has about a thousand members and I spend some time every day engaged with it.
As I try to understand the evolving science regarding chordoma, I have learned that it is a rare and aggressive cancer that can present as many other things. It is often misdiagnosed as a brain or bone tumor and then incorrectly treated. If not properly managed it can metastasize or impact nerves or brain tissue. It is critical to find a doctor who understands and has experience with chordoma or similar sarcomas. In my case this meant that most of my care to date has taken place in Vancouver (about a five hour drive from home) and for the next phase (proton beam radiation) I will need to travel to the United States for a few months. It is a highly specialized field and it is critical to get the right care.
I know that I will defeat this disease and I want to share my journey of managing chordoma through this blog.