Chordoma Foundation

Juliana’s Uncommon Story: The importance of connecting with others

The beginning of my journey with chordoma happened after I had some blood work done, which revealed an elevated hormone level. My doctor then wanted to check my pituitary gland – the hormone control center – and that testing revealed that I had a large tumor.

Due to the location of the tumor, my doctors wanted to remove as much of it as we could, since part of the tumor was right around my carotid artery. I underwent transsphenoidal surgery in November, and ended up having three surgeries total due to a cerebral spinal fluid (CSF) leak. I also had a lumbar drain placed in my spine to help drain the CSF.

My pathology results revealed it was, in fact, a chordoma, and currently I am figuring out my next steps to de-bulk the remaining part of the tumor, which will likely mean more surgery.

David, uncommon chordoma story

At the moment, physically, I feel good! I’m able to work out again and walk my dogs. Mentally, some days are tough; other days I’m feeling good. You definitely have to take it one day at a time during this journey.

One of the things I’ve found most helpful during this time has been getting in contact with quite a few other chordoma patients, some of whom are close to my age. They have each told me about their journeys and given great advice. It’s tough, because chordoma is so rare and each patient is different. I wish there was a larger pool of patients, such as for breast cancer, which would make chordoma clinical trials easier. 

I also found the Chordoma Foundation, and decided to partake in the NIH Natural History Study. Both have given me access to resources. The Foundation website has a lot of information, and I hope to join one of their virtual support groups soon. There is also a Facebook group for chordoma patients and families.

If I were to offer advice to another chordoma patient, it would be to make sure to see a doctor and/or radiation oncologist who has experience with chordoma. Yes, it is very rare, but the Chordoma Foundation has a list of doctors based on the country you live in. ASK ANY AND ALL QUESTIONS! I definitely had not heard of chordoma before going into surgery, so I had many questions during my first appointment with the specialist. 

I’d also encourage others to use your support system, whether it’s family, friends, a spouse, etc. They will be key during your journey. I’d also recommend getting in touch with other chordoma patients your age.

An uncommon level of commitment from the chordoma patient community has been the key driver of new discoveries that are changing the outlook for this disease. Check out five ways that each of us affected by chordoma can fuel research advances that will dramatically improve treatments and outcomes.

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