So I know people have been waiting for an update...trust me when I say me too! My dad and I met with the oncologists yesterday. I see a radiation oncologist and a medical/neuro oncologist...the same ones I saw after my first surgery two years ago. We saw the radiation oncologist first and her recommendation is to do radiation, starting sometime within the next 2-4 weeks. We discussed location of treatments. We are all in a bit of an agreement that Hopkins would be too difficult. Radiation is 5 days a week for 6 weeks, it takes me an hour in no traffic to drive to Baltimore and they estimate spending around an hour there, and then an hour drive back. The biggest side effect is fatigue. That will probably be too much. Which is a shame because I really like this doctor. Other options are to do it here in Virginia at Inova Fairfax - a great hospital but not a brain tumor center, or go back to Boston, which will probably be what I do but we're still working it out. If I go somewhere other than Hopkins I would temporarily transfer all my care to that facility and then transfer it back for follow ups when I get back to Virginia since I'll be getting MRI's every 2 months (serious downgrade in the MRI department).
We saw the oncologist next. From talking with both my surgeon and the radiation oncologist I was pretty much prepared to be told I would do chemo too as that was both their recommendations. However he does not want me to do chemo at this time. The most frustrating issue we have right now is that the pathologists at Hopkins won't grade, or even classify, my tumor.
Here's a quick brain tumor rundown (more info on the right sidebar). Brain tumors are classified by cell type (we know mine is an astrocytoma) and then further classified by other features they see so there are quite a few types with each type having it's own standards of care. Then there is the tumor grade 1 (benign) to 4 (not good, don't google it). After my first surgery the pathologists classified my tumor as a low grade (2) astrocytoma with unusual features. Two other hospitals classified it as a pleomorphic xanthoastrocytoma (PXA) with anaplastic features. Here's the kicker - that tumor is so rare it doesn't have a grade under the current World Health Organization guidelines, nor does it have a standard of care since it's so rare. This time around Hopkins pretty much said the tumor was similar to before but with some features concerning for increased aggressiveness (for lack of a better word), but no grade, no name, only the possibility of it still being the PXA with anaplastic features. The radiation oncologists said we're basically in a gray 2-3 area. My pathology is again being sent to Dana Farber & Memorial Sloan Kettering to see what a few more sets of eyes think.
So back to meeting with the oncologist. Because of the pathology report his take is that if it's still grade 2 then chemo won't be effective on it and might cause me a lot of problems/side effects with no effect on the tumor. He has valid points and laid it out for us pretty well. Chemo won't cure a grade 2 tumor, nor will it cure a grade 3 or 4 tumor. There is no "cure". There is hope that it won't come back, many people have had their tumors treated and not come back for many many years. That's what we want. However his take is that if/when it comes back and it comes back as a definite grade 3 then we can use chemo because we know it's more effective against grade 3 tumors (that is the "natural" progression of brain tumors by the way, when they come back they tend to be more aggressive/higher grade). In any case I have a lifetime membership to the MRI center. He does agree that I do radiation and we hope that radiation will give me a lot longer than 20 months before we have to talk again.
The oncologist also said that he and the other doctors & pathologists would discuss my case again this Monday, which is a little annoying because you'd think they'd have done that before my appointment. The radiation oncologist told us she was going to try to push the pathologist to put a number on it but I haven't heard back from her so I'm guessing he didn't. So I will have final word on Monday about their thoughts on the chemo although I have a feeling the oncologist will win that battle.
That of course brings us to second opinions and if I already end up going to Dana Farber for radiation I'll probably see an oncologist there too who might have a completely different opinion and want me to do chemo. So who knows how that will work. All I know right now is that I will be going forward with radiation in the next few weeks (hopefully after the Umass boathouse opening) and chemo probably won't be happening.
I am back in Virginia, hopefully until shortly after Labor Day (going home for the boathouse opening and of course potentially 6-8 weeks for radiation/recovery), and headed to Chicago this weekend for a long overdue visit to see Anne & Alex.
Thanks for checking in!