My neuro-oncologist is Dr. Lynne Taylor, and my neurosurgeon is Dr. Joseph Serrone.
At Virginia Mason, doctors get together and review these sorts of cases with a team of people once every other week. Here were the physicians who reviewed my case:
They met on March 13th and decided not to perform “pre-treatment” proton radiation therapy, but that it would be better to start by trying to remove as much of the tumor as possible surgically.
They called this “attempted resection for debulking and diagnosis”.
Dr. Taylor met with us to share the outcome of this meeting. She said because the mass has a relatively solid outline, isn’t blotchy-looking in the middle, appears to have been very slow-growing, and is off-center rather than in the middle, everyone agreed it looks a lot like chondrosarcoma. She thought if it turns out to be chondrosarcoma, radiation may not be necessary. She gave me a research paper about chondrosarcoma. Here are her notes about the meeting:
“Maria Nichols is a 42-year-old woman with a longstanding history of diplopia dating back many years. Neurologic examination reveals a left 6th nerve palsy without other findings, and radiographic studies demonstrate a clival mass lesion, asymmetric to the left. There is no dural tail and I do not think this is likely to be a meningioma, and given the off midline location I think a chordoma is also unlikely. The imaging characteristics suggest a chondrosarcoma as a possibility. She will need surgery for definitive diagnosis. I gave her a paper on chondrosarcomas compared to chordomas and showed that survival can be prolonged depending on the degree of resection. I do not think there is any role for treatment of any kind prior to a diagnosis. She was given a copy of Ossama Al-Mefty’s paper, “Chordoma and Chondrosarcoma: Similar But Quite Different Skull Based Tumors,” which was published in Cancer 2007; 110: 2457-67. This was a review of 109 patients treated by Dr. Al-Mefty at the University of Arkansas in a 16 year period. He noted that the chondrosarcoma patients had a significantly better outcome compared to the chordoma patients both with regard to survival and recurrence-free survival as contrasted to patients with chondroid chordomas. He stressed that the optimal treatment involves radical surgical resection followed by high-dose radiotherapy in patients with chordomas but not likely to be necessary in patients with low-grade chondrosarcoma. These features were stressed to Maria and her husband, Abram. They had many questions, all of which were answered in great detail. She will be seeing Dr. Serrone and Dr. Seth Schwartz in the near future to plan the surgical resection. I will see her back in followup once the surgery has been completed.”
I’ve got some research to do.