Admittedly, I was hoping Jude’s brain cancer had disappeared after the surgery 1-1/2 years ago and hadn’t taken the time to get to know what we are potentially up against. I still have quite a few unanswered questions, as shown below.
Hi Dr. Bendel,
I have some follow-up questions for you. None of them are time sensitive, but instead are things that I have been curious about, but haven’t had the opportunity to ask. You can respond over email or when we see you later this week after Jude’s surgery.
1. Where could this tumor spread to? I believe you mentioned at our last appointment that it could spread to the surface of the brain and the spinal cord. Am I missing anything?
2. If it spread to the surface of the brain, what are the consequences? Is that a worse location for purposes of a full resection or worse as far as what that area of the brain might control?
3. What are the consequences of the tumor spreading to the spinal cord? What sort of surgery/treatment would typically be involved?
4. Can you tell me Jude’s specific diagnosis, using all the appropriate medical terminology? Grade 2 ependymoma, left parietal region. Anything more specific than this?
5. Does the fact that Jude’s tumor has recurred make it more likely to be Grade 3?
6. Do you happen to know what was done with Jude’s tissue sample from the 1st surgery?
7. Do you happen to know if Jude’s tissue sample from the 1st surgery was tested for biomarkers (proteins that play a role in the tumor’s aggression) and, if so, what the researchers found?
8. I remember you mentioned originally that there were 13 kids researchers were tracking with the same tumor as Jude’s in the same location as Jude’s. I remember you said there was a 14% chance of recurrence the first time around. I believe you have since mentioned that the chance of recurrence would be greater now since it has come back once. Do you happen to know what that percentage of a 2nd recurrence would be, assuming Grade 2 and no proton radiation treatment? Where does this data come from (is it limited to those with the same Grade and location of tumor as Jude’s or is it more generalized data)?
9. My understanding is that the risk of proton radiation is potential vision loss, vision loss, cognitive impairment and secondary cancer? Am I missing any potential risks? What is the chance that these various things would happen as a result of the radiation treatment? Maybe this is a question for a doctor at one of the proton radiation treatment centers.
10. My understanding is that the risks associated with brain radiation decrease with age, with it being the riskiest for children under 7. Is that correct? Maybe this is a question for a doctor at one of the proton radiation treatment centers.
11. My understanding is that the risk of waiting to perform radiation treatment is that the tumor tends to grow back deeper in the cavity that was created from the earlier resections and that it can be harder to remove in the 3rd surgery or it can spread. Are there any other risks to waiting to perform radiation treatment?
12. My understanding is that, based on the results of the functional MRI, Jude’s sensory function is controlled by a part of his brain that is located about 2.5 cm away from the tumor location. This seems like a safe distance to me. Is that understanding correct? Are we aware of any other vital functions that are controlled by an area in close proximity to Jude’s tumor location?
Thanks so much for your help and for always doing such a great job taking the time to explain stuff to us!
Jessica