Chordoma Foundation

Craig’s Uncommon Story: A patient needs to be vigilant

Craig, Uncommon chordoma story

My journey started in 2019 when I came down with the flu. My primary doctor sent me to get a chest x-ray to rule out pneumonia. The chest x-ray came back showing a nodule on the lung. This led to a CT scan of my abdomen, revealing a tumor on the left kidney. I then had an MRI that validated the first two items, but also revealed a lesion on my spine (L5/S1).

My wife and I soon found ourselves traveling to Johns Hopkins after being referred from my primary care provider. Ultimately, we learned that the lung nodule was a non-issue; it has since disappeared. And the kidney tumor was a non-aggressive renal cell carcinoma, which was successfully removed with no follow-up treatment needed.

But the spine tumor was a bit different. I was initially seeing an orthopedic surgeon when one of Johns Hopkins neurosurgeons reached out to me. It was Dr. Larry Lo, who was very impressive and offered some great options and specialized treatment. He ended up doing my six-hour surgery, taking the time needed to remove the tumor from around the spinal cord allowing me to keep my motor functions intact.

Craig, Uncommon chordoma story

I was mentally prepared to spend the rest of my life in a wheelchair if needed. It would have been a very hard pill to swallow, but I was mentally prepared for it, if that is what it meant to treat the tumor and give me longevity.

I had cyberknife radiation treatment to address the remaining tumor that he could not reach without cutting a nerve coming out of the S1, which controls my left foot. Cutting it would give me foot drop. My doctor reassured me that he felt confident the radiation would kill the tumor and preserve the nerve.

I had all of the above completed within six months of the discovery of the tumors. I had zero symptoms, and no clue I had anything going on inside me.

This all has given me the drive to live and not put things off for tomorrow. At the time, in November 2019, I did not know if I would live to see 2020.

When I found the chordoma community, I was relieved, and look forward to networking with the group. In hindsight, the Chordoma Foundation would have been the best resource for me as I started my journey. Unfortunately, at the time I hadn’t known of it and relied solely on what my wife and I found online by Googling cancer treatment centers. However, I didn’t know I had chordoma at the time — my diagnosis came during my spinal surgery. Since then, I’ve learned the importance of picking the right facility and doctors to handle your chordoma case. A physician experienced with chordoma is a must.

I do not know when or if this tumor will come back. I try not to worry about it, but I do find myself looking over my shoulder, waiting for the other foot to drop. A patient needs to be vigilant and educated on chordoma and new treatment options so they can be better prepared for a recurrence. I plan to stay up to date on treatment plans that are available and coming available.

We invite you to share your own Uncommon Story in your own words, which can help others in our community feel more connected and prepared to take on whatever may lie ahead. If you need help navigating chordoma, check out our free Patient Navigation Service.

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