Tuesday, May 17, 2016

UCLA MRI Results: Surgery Needed

I finally received my secondary results from the MRI. Unfortunately, UCLA believes there has been interval progression, and they are recommending brain surgery. I don't know if I could stomach a fourth surgery, but before I can commit to that anyway, I've requested a f-DOPA pet scan to verify that it is indeed tumor growth. F-DOPA pet scans can differentiate between tumor cells vs scar tissue or inflammation.

It's confusing to hear conflicting results from two different centers, but that's nothing new for me. At this point, I'm waiting for insurance to approve the scan. Next, we'll schedule the scan, and then we will review the results to see if we are dealing with a recurrence. Between now and then, we scramble for alternative plans for survival. I know that sounds alarmist, but I say it with tongue in cheek.

As always, I'll keep you abreast. (That word always makes me laugh, so I had to throw it in there.)


PS It's my brother's birthday today, so if you see him, please don't say anything until tomorrow! xo

19 comments:

  1. Oh Jessica, this is shocking news. You must be surprised. We're proud of you for knowing the option of the special scan, that you research and make sure to always fight for your health. We're praying for you.

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    1. Thank you Anonymous. It IS shocking. Thank you for your support, it's amazingly important to know that people care. :) xo

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  2. Jess - John and I just read this. Hang tight and don't jump the gun. Keep looking at that little lambie. We love you. The K/W clan. xoxo

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  3. That sucks, dude! Have you tried getting into the polio trials at Duke that you mentioned before? They have gained "Breakthrough Status" and your situation has no doubt changed so you might be able to get in now! Best of luck!

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    1. Hi Anonymous, you're right, it totally blows! I don't meet the requirements for the Duke trial, unfortunately (or fortunately since it's for a more aggressive tumor). Thank you for the comment, and for caring! xo

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  4. So sorry to hear this. Hope this other scan gives you the information you need to make the best decision.

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    1. Thank you Monkia! Fingers are crossed for a SUVmax of under 3 for the f-DOPA PET. Anything below that is not considered a recurrence, just tumor cells. My new mantra is below a 3. I used to wish I was a 10, but now I have really low standards. ;-)

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  5. You got this Jess. Love you all.
    Erin and Pete

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    1. Thank you for the love, it really means a lot. And for taking the time to send this note, so that we feel your support! You guys are very special to us. xoxo Hopefully this will all work itself out so that we can hug you in person over the 4th!

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  6. I can't imagine the feelings and emotions you have from one minute to the next. I am praying for your peace AND good news.

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    1. Thank you OtterX. You're right, it's a swirl of crazy going on in my body right now. Thank you for taking the time to send us peace, and support. It makes us feel very special, very loved. xo

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  7. Dammit, Jessica. I hate this thing with every fiber of my being. You know we're thinking of you.

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    1. Thank you Logan! You said it perfectly. With ever fiber of our beings. Sending love to you guys. :)

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  8. Hello Jessica,
    I am so glad to have found your blog today. I also have an astrocytoma in my left frontal lobe and a seizure disorder. The tumor was found by surprise in 2012 and surgery was performed immediately at NY Methodist Hospital. I was struck by how well you express how it feels to live with this diagnosis/prognosis.
    My seizures had become more frequent this past fall and an MRI showed regrowth. The past 6 moths I have been trying alternative treatments on my own. I have not had a seizure in 6 months but I received a call this morning that the followup MRI showed 'thickening'. I have been told that sometimes this could be scar tissue but the only way to tell was with a biopsy. It is great to hear there is another option. I am sending positive energy your way. :) Dana

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    1. Dana, you have no idea how relieved your message makes me feel!! UCLA has a f-DOPA, and rumor has it the Mayo Clinic has one. There may be a few other locations, but I've been having trouble getting all of that verified. I know for sure there's a f-DOPA PET in Victoria, BC. To get a scan instead of a biopsy is huge. I hope it works out for you! And let me know if there's anything else I can do to help you!

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  9. Thank you Jessica, I think there is one in Boston at MGH. My fiance is a primary care provider and he took my last 2 MRI's to 2 other radiologists at his practice. Neither saw thickening and the second person explained to him that the images they were comparing were not even taken at the same angle. I saw that you are planning to wait and have another MRI in October, I am also planning to give myself 3 more months for another MRI. Making an appointment with a Hollistic Health Center in Vermont soon to help with my diet. I lost 10 pounds and I was already skinny to begin with! Let me know if you are interested in what I find out? All the best Dana hammerfeather@hotmail.com

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    1. Hi Dana, I'm so glad you wrote! I would love to hear what you find out. I really appreciate the offer! I'm sending you a private email now. :)

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  10. It is always tough to hear of progression and possible surgery, but it is good that you decided to schedule another scan before deciding on anything. I hope the scan is approved so you can schedule it and look at all your options. I am keeping you in my thoughts, and I am hoping everything turns out okay with this situation.

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