The beginning of my journey with chordoma happened in the fall of 2021 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 blocking it.
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 and optic nerve. I underwent transsphenoidal surgery at Virgina Hospital Center in November 2021, 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, not a macroadenoma like we initially thought. I was then informed of the Chordoma Foundation and it was recommended that I find a specialist who has experience with such a rare cancer. Being located in the DMV (DC, Maryland, Virginia) area, I was looking for specialists who weren’t too far from me and stumbled upon a neurosurgeon and radiation oncologist who work closely together at Johns Hopkins Hospital. My hope was to be able to start radiation right away without needing an additional surgery. I was able to thoroughly talk with both the surgeon and oncologist who informed me that they wanted to see if another surgery could de-bulk as much of the tumor since it was still quite large.
I was scheduled for surgery in October 2022 and had my pre-op imaging done the month prior. The extremely high resolution imaging revealed the that remaining tumor was sitting higher up and further back than they thought and at least two additional surgeries would be needed, starting with a craniotomy, followed by another endonasal. I underwent my craniotomy on October 31, 2022 and the surgeon was able to remove about 90% of the tumor!
The oncology and surgery team spoke and recommended that I start radiation in January/February 2023 and that they felt radiation would be able to destroy the remaining tumor. After my radiation team consult in February 2023, I was informed that the tumor was 1mm away from my optic chiasm and brainstem and they wanted to speak with the surgeon to see if there was any more tumor that could be removed with another surgery.
I underwent my second craniotomy at Johns Hopkins on March 6, 2023 and a little bit more of the tumor was removed, but part of it is essentially impossible to get to.
Proton beam radiation began in early April 2023 at the University of Maryland Proton Center and is scheduled to be completed in mid-May, followed by a post-radiation MRI 6-8 weeks after. The remaining tumor is still somewhat close to my optic nerve and chiasm, so I have radiation twice a day, at least 6 hours apart and will have it for 6 weeks. I am truly grateful for all of the doctors/nurses/PAs/NPs/team at UMD for all they have done throughout this journey.
At the moment, 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 truly 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 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. Lastly, one of the best benefits from my craniotomy surgeries has been getting an awesome haircut!