Yesterday was my first time meeting with an oncologist. It was a little intimidating, but my docs are trying to be very thorough right now, and this is one step we can't skip. With my brain lesions active and growing, it is more urgent than ever to find out what is causing them, or what they are.
The oncologist agreed with every other doctor, that this is something extremely rare. He said it doesn't look like anything he's seen before (that's sort of good news, coming from an oncologist!) He did confirm that my brain lesion grew between the Nov 2015 scan and the Jan 2016 scan, which is discouraging. He said that it is unlikely the lesion will stop growing without an intervention, or it would already have done so. He said at some point it is going to be absolutely necessary to have a diagnosis, so we can decide what that intervention should be. He asked that we stay open to the idea a biopsy, even though it is risky (my largest brain lesion is in a very dangerous spot for a biopsy). He's not the only one to say this to us recently, but it's a scary thought. I have been told there is a strong chance of paralyzing something with this biopsy. He went on to tell me the risks of not doing the biopsy, if it comes down to it. He said if the lesion continues to grow, I am at risk for losing muscle control on my right side, or losing the ability to speak. He also listed several other possible complications, but I sort of tuned them out after he mentioned my speech. It's crazy to even think about. It just feels like that couldn't actually be a possibility. He did follow this up with the reassurance that nothing is happening fast here, so we have some time to think, but he said we need to figure this out sooner than later.
THOUGHTS ON PLASMAPHERESIS
We talked about the theory of autoimmune encephalitis and the current plasmapheresis treatments. He said he absolutely agrees with the treatments, even if its just for treating the antibodies and the symptoms. He says my VGKC antibodies are more than three times the highest range of normal, and they should be addressed to see which symptoms that rules out. He agrees that there is a chance that this treatment will also improve my brain lesions, and said he thought it was "sensible" to try this treatment before considering the biopsy. So he's on board. We will do the treatments, then do the MRI to see if anything changed, and go from there.
TESTS
In the meantime, he says that he wants to do a full body PET scan and a brain PET scan to see if there are any clues to other growths, whether granulomas or any signs of cancer 😕 He says we need to stay ahead of this and continue collecting information and getting opinions. He also ordered labs to look for inflammatory markers that he said will give him clues from an oncology perspective.
TUMOR BOARD
The doc is going to take my case to a panel of neurologists, radiologists, pathologists, and oncologists, who will look over my scans and discuss their ideas of what it could be. (They call it Tumor Board) The panel will come to a conclusion on what they think it is, and what they think we should do about it. I am so interested to hear what they will say! This is actually the reason my neurologists sent me to Barrow for this consultation, because they wanted a "Tumor Board" to be done on my scans. So we will see what they come up with. I highly doubt they will recommend a specific diagnosis (if history tell me anything) but I am very interested to hear what they think. It's really cool that they do these collaborative reviews. I will post updates when I have them.
The oncologist agreed with every other doctor, that this is something extremely rare. He said it doesn't look like anything he's seen before (that's sort of good news, coming from an oncologist!) He did confirm that my brain lesion grew between the Nov 2015 scan and the Jan 2016 scan, which is discouraging. He said that it is unlikely the lesion will stop growing without an intervention, or it would already have done so. He said at some point it is going to be absolutely necessary to have a diagnosis, so we can decide what that intervention should be. He asked that we stay open to the idea a biopsy, even though it is risky (my largest brain lesion is in a very dangerous spot for a biopsy). He's not the only one to say this to us recently, but it's a scary thought. I have been told there is a strong chance of paralyzing something with this biopsy. He went on to tell me the risks of not doing the biopsy, if it comes down to it. He said if the lesion continues to grow, I am at risk for losing muscle control on my right side, or losing the ability to speak. He also listed several other possible complications, but I sort of tuned them out after he mentioned my speech. It's crazy to even think about. It just feels like that couldn't actually be a possibility. He did follow this up with the reassurance that nothing is happening fast here, so we have some time to think, but he said we need to figure this out sooner than later.
THOUGHTS ON PLASMAPHERESIS
We talked about the theory of autoimmune encephalitis and the current plasmapheresis treatments. He said he absolutely agrees with the treatments, even if its just for treating the antibodies and the symptoms. He says my VGKC antibodies are more than three times the highest range of normal, and they should be addressed to see which symptoms that rules out. He agrees that there is a chance that this treatment will also improve my brain lesions, and said he thought it was "sensible" to try this treatment before considering the biopsy. So he's on board. We will do the treatments, then do the MRI to see if anything changed, and go from there.
TESTS
In the meantime, he says that he wants to do a full body PET scan and a brain PET scan to see if there are any clues to other growths, whether granulomas or any signs of cancer 😕 He says we need to stay ahead of this and continue collecting information and getting opinions. He also ordered labs to look for inflammatory markers that he said will give him clues from an oncology perspective.
TUMOR BOARD
The doc is going to take my case to a panel of neurologists, radiologists, pathologists, and oncologists, who will look over my scans and discuss their ideas of what it could be. (They call it Tumor Board) The panel will come to a conclusion on what they think it is, and what they think we should do about it. I am so interested to hear what they will say! This is actually the reason my neurologists sent me to Barrow for this consultation, because they wanted a "Tumor Board" to be done on my scans. So we will see what they come up with. I highly doubt they will recommend a specific diagnosis (if history tell me anything) but I am very interested to hear what they think. It's really cool that they do these collaborative reviews. I will post updates when I have them.
RECENT MRI IMAGES
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