Hi all,
I met with Ennio Chiocca at Brigham and Women's/Dana Farber earlier this week. He will do my surgery to remove the presumed Oligo 2 from my left frontal lobe. It will be awake surgery. Currently we are planning to do the surgery around mid-November to allow me to nurse our newborn until he is at least 6 months (I'll try to continue after the surgery but this way he'll at least get a solid 6 months of nursing for sure).
I like Dr. Chiocca's nature and the positive things he had to say about my prognosis. Has anyone worked with him? What he said that stood out is that there is a good chance this tumor won't come back. I questioned him in that, since no one else has said such a thing. He said technically this tumor was only discovered in 2008 (IDH and co-deleted), and so we can't say for sure how they function and it could be that they don't always come back. He said there's an 80% chance it will not be back in 10 years. Thoughts on that?
Like others, though, he was not able to address the other symptoms I'm experiencing (sense that my left eye is bulging slightly, blurry spot in my left vision, drop in BP since the seizure, etc.)
Can someone talk about how they measure these things? UVM measures it as 2.9APx31.5transverse x 1.7 craniocaudal. BW has it at 3.3AP, I'm told that's a trivial difference. It didn't grow during pregnancy (at least not after it was discovered), so that seems positive.
Additionally, at my last check up with my local NO he mentioned a second spot. It is a white matter lesion 3mm, nonspecific. Everyone has told me not to worry about this but it seems worrisome to me!
Thanks for any input.
Maria
I'm not sure what he meant by "it won't come back". Your tumor hasn't been resected yet so it hasn't gone anywhere, and there are so many variables playing into how long it takes to come back (if it does), one of the most important being successful surgery, so it is a little premature to start putting specific percentage estimates on odds of recurrence, before you've even had your resection.
ReplyDeleteOther major factors include whether this is indeed an oligodendroglioma, as expected, which tend to be more treatable and with better outcomes compared to astrocytoma.
If the tumor is completely resected, and it is an IDH1-mutant oligo, than yes it's possible you go could go 10 years or more without it coming back, but that to a large extent depends on how successful the surgery is.
Where is the second in relation to the original one?
Thanks, Stephen. It's on the left also, lower down (parietal, sp ). It's juxtacortical.
ReplyDeleteWhat do you think about him saying it was only technically discovered in 2008? Also, any experience (or in your case awareness of others who have had experience) with him? He's the head of neurosurgery at Brigham and Women's.
Thank you for your help!
It's true the discovery of IDH1 mutations in glioma was in 2008. However, it's still possible to retrospectively examine preserved tumor tissue to find out which tumors were IDH1 mutated, including tumors that were resected many years before 2008.
Delete1p/19q codeletion has been known since at least the mid 1990s.
https://www.ncbi.nlm.nih.gov/pubmed/7622310
https://www.ncbi.nlm.nih.gov/pubmed/7815084
Of course it was only later discovered (after 2008) that these oligodendrogliomas with 1p/19q codeletion are virtually all IDH1 (or rarely IDH2) mutated as well.
Sorry, I have no experience and don't know of anyone who does with him, but maybe somebody else here does.
In case you're interested, I believe the first study detailing the finding of IDH1 mutations in GBM and lower grade gliomas was this one, September 2008 publication date:
Deletehttps://www.ncbi.nlm.nih.gov/pubmed/18772396
Thank you very much, Stephen.
DeleteAppreciatively,
Maria
I agree with Stephen. Me personally wouldn't choose a neurosurgeon based on his "positive nature", but on his results from past surgeries and EXPERIENCE (!).
ReplyDeleteI was in exact same situation as you. I read a lot of studies and contacted a lot of surgeons, in hopes to find someone who would tell me that "this can be cured". But the truth is, no one can tell you that - especially not before surgery. Even if you have complete resection and good prognostic factors (mutations,...).
It was shown by few studies that glioma cells are found even 2 cm away from tumor margin seen on MRI. So from that perspective it is virtually impossible to get all glioma cells out. But I think it isn't all that grim. Some tumors don't recurr even after 20+ years. I pasted those "positive" studies in some other post. At the moment we simply don't know why some LGGs don't come back after complete resection. But the first step to delaying/preventing recurrence is successful surgery (complete resection with some "safety" margin if possible).
Thanks for your input, Matjaz. He is the third surgeon I've spoken with. I'm willing to travel anywhere (although going to France would pose some significant challenges) but it seems everyone thinks the tumor is accessible and should be straightforward, as brain surgery goes I guess. It is at the surface of my brain.
DeleteSo, I think the tendency is to want to assign me to any brain surgeon. I'm choosing Dr. Chiocca because he is the head of neurosurgery at Brigham and Women's, this is one of Harvard's teaching hospitals and the practical arm of Dana Farber. His positive nature is a bonus.
But I feel as though these optimistic doctors seem at odds with what I'm reading. I guess in their line of work they see much more devastating diagnosis often. I also realize they probably want to be careful about how they diagnose someone with a disease like this, likely slowly terminal without much neurological deficit for some time and while more and more promising treatments and research coming out regularly.
Maria
Don't get me wrong - I didn't say there aren't good neurosurgeons in USA and that you should travel. I just meant that you should choose a surgeon based on experience and not on his positive nature.
DeleteAs I have written - there are few studies mentioning that tumor glioma cells are found up to 2 cm from tumor MRI margin. That's why dr. Duffau practices "supratotal" resection for 15+ years already, which is resection of glioma and healthy tissue (if possible) all the way to the eloquent areas (areas for speech, motor cortex,...). That way he tries to get out those isolated glioma cells, leaving you without permanent deficits. It has to be done with awake surgery. Do you know if your surgeon also practices this approach? I think it is worth looking into.
It will be awake. I meant to ask about supratotal but it slipped my mind. I've asked NO's who say it's not necessary. Ive been wondering about supratotal resection if there is recurrence...does it complicate future rejections? I haven't read through the study Duke did in the late 90's but I've read Dr. Daffau's and it's convincing. I wonder why more doctors haven't taken it on?
DeleteI didn't think you were saying there aren't good surgeons in the US. :)
Rejections = resections
Delete