Friday, June 8, 2012

And the votes are in...

So this past Tuesday was the 6 month anniversary of my surgery. Time is flying! I didn't get a chance to celebrate since I had to do real-life things like go to work, but I had just spent the entire weekend in California with one of my bestest friends ever so that could probably count :-)

Got my feet wet in the Pacific Ocean!

So in the six months since my surgery I have now been back at work for four months, biked 50 miles and raised over $2500 for the National Brain Tumor Society, attended the first of three weddings for this year (in Oklahoma), traveled to California (with a lay over in Chicago long enough to count as a visit!), discovered that I do NOT look good with bangs but am now able to clip my hair back so you really can't tell it's any different from the rest (until a good gust of wind blows in), I would guess it's about 3-4 inches long at this point. I have learned way too much about brain tumors but am trying to use that knowledge to spread awareness in any way I can and I have connected with survivors, care givers and family members from all over the country, each who has his or her own awesome and inspiring tale to tell.

I received this from the mother of another BT fighter.
Made in his memory; "No Day but Today". 

Since my surgery & diagnosis 6 months ago I have also decided to seek second opinions about my pathology (you can read about why in the post right before this one). Really, I've just been wondering if someone can give me a more solid name & diagnosis. Well I've had my tumor sent to two different hospitals; Dana Farber & Memorial Sloan Kettering Cancer Center. They both came up with the SAME diagnosis, and one that is different from what Johns Hopkins said. Dana Farber diagnosed a "Pleomorphic Xanthoastrocytoma with Anaplastic Features" (although stated a differential diagnosis of a high grade glioma). Memorial Sloan diagnosed a "Variant of Pleomorphic Xanthoastrocytoma with Anaplastic Features". That's a lot to write so I'm just going to call it PXA/AF. I also can't really tell you what that means. It is a VERY rare tumor and there are few websites or articles with info. Most of my research has involved the librarians at work hunting down articles that I would otherwise have to pay for and most of those articles are based on the same studies and same people. There is more research out there on the "typical" PXA - one without anaplastic features and by many this tumor is considered low grade to the point of being "benign", however there have been instances where it has re-grown and changed into a higher grade tumor (most brain tumor survivors/experts will argue that no brain tumor is ever truly benign, there are always some that come back no matter what). There are very few studies done on primary PXA/AF (meaning anaplastic features are present upon the initial presentation/diagnosis). For those of you that have no idea what I'm talking about when I say "anaplastic features" basically this means that part of the cellularity of the tumor is more aggressive (malignant) than a typical, low grade tumor. In my case my tumor presented with mitosis (active cell division) and necrosis (cell death), both are uncommon features of low grade tumors.

So what now? I have no idea! Really. I will be making appointments with my doctors at Hopkins to go over the alternate diagnosis and see what they think. As little research as I have been able to find on PXA/AF there is even less on treating it. Because it is so rare there is no real agreed upon treatment plan and it is left up to the individual doctors/patients to determine the course of action. I have spoken with people who have/had PXA/AF and some have treated it and others have done the watch & wait. Some of their tumors grew back, some the same and others higher grade and some people's tumors didn't grow back at all (and when I say "people" I mean like four...it's rare). In any case I have another MRI & appointment with my surgeon early in July so that's not too far off anyways. I can't even begin to talk about treatments until I find out if that's even an option for me - my doctors might be comfortable just continuing to watch it closely, they may not even agree with the alternate diagnosis and if that is the case I will be asking why and for their opinions. There is of course always the option of seeing a doctor at one of the other hospitals for their opinion, but I am not there yet.

So anyways, no other news for now. Probably won't be for a few weeks until I have that appointment. I have a low key couple of weeks coming up which is good because my bank account needs a break :-)

Sunset in Monterey, CA. Too bad it was cloudy. 

2 comments:

  1. Hi Erin-

    I'm glad to hear that you got more pathologists to check out your tumor. It has to help your primary doctor to help map out a plan for further treatment. It sounds like you are still seeing your neurosurgeon. I did that too for about two years, and then he referred me to a neuro oncologist to take over my case, and be my overall care giver. My neurosurgeon is in high demand, and it just seemed like the right thing to do to take the load off of him. I'll keep on checking in here on your progress. Hoped you liked Monterrey, and made it to the Auquarium there. The Sea Otters are cool.

    My best to you-

    Scott

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  2. Thanks for checking in! My surgeon requested he be the one to follow up with me...I don't know how long that will last! I will be seeing all of my doctors (since I already have an oncologist & radiation onc) about the second opinions though. We'll see what they have to say.
    Monterrey was beautiful, did go to the aquarium but the otters were sleeping :-(

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