In preparation for the meeting with Jude’s oncologist today, I read all the literature (5 articles) describing what happened to various patients world-wide with this tumor who received different treatments.  So, I feel like I know more than ever what we are up against. After the meeting, I’m feeling more comfortable taking our chances on the surgery alone being the cure for Jude.  The big take-aways for me from the meeting and articles were:
1. Surgery alone is often curative for ependymomas if gross total resection is achieved and given that the tumor was smaller the 2nd time, and the surgeon thinks he got it all (as he did last time), the 2nd surgery should have been easier than the 1st one. Nevertheless, the standard of care at recurrence is radiation. We found 3 patients world-wide attempting surgery only at recurrance with the same type of tumor and it worked well for 2, but the other died from his tumor (it kept recurring and they hit it with radiation and chemo and it didn’t work).
2. Given the small #s of similar patients involved (20 or so worldwide), we don’t have good data, but her gut reaction is that there is a 20% chance the tumor would come back after radiation. There is a 30-60% chance the tumor would come back without radiation. I would be sick if that tumor came back after radiation.
3. If there is any residual tumor cells in Jude (which we hope is not the case), there is a 30% chance they will morph into a more aggressive Grade III cancer.
4. Jude’s tumor isn’t associated with the ventricle, which lowers the chance of spread into the spinal fluid. However, given that the surgeon had to cut a path from the surface of Jude’s brain to the tumor bed, any residual tumor cells could seep out to the surface of the brain and that would be most likely fatal. The chance of metastasis at another recurrance (which would be fatal) is 5% or so.
5. Even with radiation, the tumor can still come back and still spread before it is detected.
6. 15% of children with supratentorial cortical ependymomas die somehow from their tumor (from the tumor getting too deep in the brain to be removed or from spread. But, this accounts for all Grades of the ependymoma and Jude has a Grade II rather than Grade II and Jude’s location is more favorable than other locations. So, we are still looking at a big chance of a great out
7. I told her that $ is no object here and we can self-pay if we have to and wanted to know if there is anyone else that she feels we should consult with. She’s going to follow up with an oncologist with emphasis on ependymoma in Denver who doesn’t always do what everyone else does to see what he thinks about Jude’s case. She thinks he is more likely to think that not doing radiation would be a good decision. She did say that if we decided not to pursue radiation, it would not be a “bad decision.”Â
8. When I asked her if she would do the radiation at this point if this was her own child, she hesitated and said slowly (while thinking about it), “I think so.” She said that that is a very difficult question to answer and she’d like to think she practiced medicine that way. Overall, I got the impression that she would really wrestle with this decision, just like I am, if this were her own child.Â
9. She said that the radiation “could just look like it’s helping because so many patients get it.” In other words, it may not actually be helping.Â