We are back from the appointments with the radiation oncologist and pediatric neuro-oncologist at Mayo. Overall, we are right back to where we were before the visit. The radiation oncologist (who, naturally, advocates for radiation), said that in the 20 cases of pediatric supratentorial cortical ependymoma that Mayo has seen over the past 20 years, only 1 case was cured with surgery alone. I think that statistic is scary, but highly scewed. For one, surgeries 20 or even 10 or 5 years ago would not have been as likely to result in gross total resection since techniques weren’t as good and intraoperative MRIs machines were not available to assist in confirming gross total resection. In addition, 10 years ago, everyone radiated after even the first gross total resection for ependymoma so of course they weren’t cured with surgery alone since that wasn’t even presented to them as an option. She said that she has seen one child with a supratentorial ependymoma (in a location similar to Jude’s) die because the tumor recurred in an area of the brain that was too deep to resect. She said that 67% of patients with gross total resection without radiation had their tumor come back (in other words, she thinks there is a 33% chance Jude is cured now without radiation). That’s similar to what we’ve been hearing, although we heard it could be up to a 60% chance of cure without radiation. She said that there is a 25% chance that the ependymoma will still come back after radiation. That is also consistent with what we’ve heard (we’ve heard up to 33% chance it will come back regardless of radiation sometime in the next 23 years). The most surprising thing she said was the big impact that the radiation would have on IQ. The Abbott radiation oncologist didn’t expect any cognitive changes. The IU proton doctor said there would be no impact and that the brain tumors and surgeries are what causes the drop in IQ. This lady said that they see a 1-2 point IQ drop for every year until the child reaches age 9 or 12. In other words, Jude’s IQ could drop 10-12 points. It’s possible this impact would be less with proton radiation. It’s possible that neurotherapy in the future (which is in development) could assist in getting back some of what is lost. She also said it could help that we homeschool Jude and could pay more attention to him than a traditional school environment and that because of that he might not have a big drop. It sounds like it takes 4-5 years for the IQ drop to show up in IQ testing. She also said that although radiation can be done to the same location twice, but the side effects double and there is a 20% chance of brain acrosis the 2nd time around (which I think means brain damage due to the healthy brain tissue liquifying from the radiation). She said, unlike the other 2 radiation doctors we spoke with, that if Jude could make it to 9 or 12 without radiation, the impact to IQ would be minimal.
The pediatric neuro-oncologist said that the fact that the tumor regrew tells us something about its biology. She said the initial tumor was “an ugly looking tumor.” I’m not sure what she meant by it, but I took it to mean that it’s not something that we want to mess around with. She also pointed out that the tumor bed is near the surface of the brain. That’s good for 2 reasons and bad for another. It’s good because it’s easy to get to in a surgery and less good tissue would have to get radiated on the way there, but bad because any residual tumor cells could leak out of the tunnel that was created from the surface of the brain to the tumor bed and don’t have too far to travel to do that and that would then be fatal. She said we don’t know whether this recurrence is a progression of what was left behind or a true recurrence. She also was concerned about the tumor coming back deeper in the brain and having to sacrifice Jude’s vision to get to it. She agreed with the 1-2 points per year in IQ drop from the radiation until he’s 9 or 12. She also raised a new issue about research that is showing that during proton radiation, the protons may get contaminated by the neutrons and then the neutrons can scatter and cause secondary tumors throughout the brain. She said it would be “fair to go ahead with radiation.” She said it is “not an easy decision” and that not radiating would not be the “wrong decision” and would be “OK” but that we would be “taking a chance.” Overall, her 3 concerns with waiting and seeing (as we’ve been doing): (1) the pathology changes to Grade III; (2) the tumor travels to the surface of the brain and then is fatgal; or (3) the tumor spreads deeper into the center of the brain and then becomes difficult or impossible to remove without causing severe neurological injury, loss of vision, etc. She said that we should go with our gut. The only curve ball she threw at us was that the tumor from 2010 and this latest tumor have the features of ependymoma (which was his diagnosis), but also have features of neurocytoma. Neurocytoma usually occurs in the middle of the brain and is a less aggressive cancer than ependymoma and would be a better cancer to have, although it is even more rare than supratentorial cortical ependymoa. She said that if it is a neurocytoma, she is not sure if radiation is warranted. It’s unlikely to be a neurocytoma since the pathologist at Children’s and the pathologist at Johns Hopkins both agreed on pathology both times. And, Mayo said that the Johns Hopkins doctor is the best pediatric pathologist in the country. Right now, I’m hoping that guy made a mistake and misdiagnosed Jude. That would give me the get-out-of-radiation-free card that I so desperately want. Mayo has requested a block of tissue from Children’s so they can do the tissue staining themselves and we should have final pathology on Monday.
Monday is when we are supposed to be driving to Indiana for the proton radiation simulation/set-up. I know it’s unlikely, but I’d love to get a call from Dr. Rao from Mayo that it was a neurocytoma and that we need to turn around and not radiate Jude’s cute, little brain. I absolutely hate the idea of radiating Jude’s brain when we have no reason to believe they’d be radiating anything but healthy tissue. We think the surgeon got all the tumor cells. The thought of radiating Jude is a thought right out of a horror movie for me. First, they will knock him out, then they will restrain him, then they will put on some custom-made, radioactive mask on his face and then they will shoot radiation into his head that is designed to kill cells. And, to think we would voluntarily deliver him to the radiation treatment center  every day for 6 weeks and 3 days to have his brain cells killed is just the most repulsive thought to me. I’d be racing him there if I knew there were some bad cells to kill, but we don’t know that.
But, then again, I hate the idea of burying Jude is a box one day because I’m trying to keep the same kid that I’ve got and not have to worry about all the side effects of radiation, including stroke and more brain tumors.  URGH! Andy’s gut says to listen to the doctors and radiate. If I go along with that, I’ll be furious if this tumor came back regardless of radiation and we wasted one of our radiation attempts.  This is tough.