Friday, August 1, 2014

New Blog Page

Hey Guys, I've been working on this page for a bit. I'm trying to make it easier for tumor fighters to navigate my blog, and the tumor world. I'm pulling essential information to the front page of the blog so that newly diagnosed/newly recurrent tumor fighters don't have to sift through all of the posts to get pointers. I've copied and pasted my list below. If any of you tumor fighters (or anyone in general) have suggestions, I would really appreciate it. I know that I wish I would have had this information when I was originally diagnosed, it would have saved me a lot of trouble, headache, and disappointment. That's what I'm trying to prevent for others.

What to Know About Brain Surgeries

This is a list-in-progress of things I've learned throughout the past few years of fighting brain tumors (feel free to add suggestions in the comments section):
  • You want a neurosurgeon/oncologist that is incredibly familiar with your specific diagnosis (subtype of tumor, molecular abnormalities, etc.). 
  • You want a neurosurgeon that performs 300+ brain tumor resections a year.
  • You want a neurosurgeon that is actively involved in clinical trials for your specific diagnosis/pathology. 
  • Don't be afraid to email doctors, or tumor fighters with websites/blogs to ask questions. Especially if you find a promising clinical trial, look for the lead doctor's name and seek them out and ask questions. Doctors that are conducting clinical trials are very passionate about their work and are happy to help.
  • After your initial MRI (with diagnosis) but before your surgery, your doctors should require a fMRI to make sure that your tumor isn't located in a delicate area of your brain.
  • What is a fMRI? Click for information.
  • If your tumor is located in a tricky area, the doctors may request a partially awake surgery to keep your healthy brain in tact
  • What is a Partially Awake Craniotomy? Click for information. It sounds scary, but you don't want to lose any of your healthy brain, because once it's removed you can't get it back. Depending on where your tumor is growing, if your neurosurgeon doesn't map out your brain, and do an awake surgery when needed, they can cause severe damage to your language areas, your movement, heck, it could really damage you for life.
  • If you have a low grade glioma, or doctors aren't sure, they should request a F-FDOPA PET scan to determine the mass. F-FDOPA PET scans are only available at top brain tumor centers. If you ask for a F-FDOPA PET scan and your doctors aren't familiar, or if they don't have the capability, ask for a referral to a center that does. You may have to travel for it, but trust me, this is your brain. It's worth it. This is especially important for recurrent low grade gliomas. A F-FDOPA PET scan can determine whether an area on a MRI is showing scar tissue, necrosis, or if it is active tumor growth. That is imperative when doctors are wanting to do another brain surgery, or are pushing for treatments like radiation or chemotherapy. You want to make sure that you truly have a tumor growing in your head before you damage your body. I have heard of patients going in for a second brain tumor resection only to find out after the fact that the image on the MRI had only been scar tissue.
  • What is a F-FDOPA PET? Click for information. ("F-FDOPA activity may identify tumor not visible on MRI")
  • Before you go in for surgery ask for your tumor tissue to be flash frozen instead of being put in the standard paraffin wax. That will allow your tissue to remain viable for immunotherapy treatments in the future. Also, ask that they don't use your tissue for testing, that it remain in tact.
  • What is tissue banking? Click for information
  • My most recent tumor is being banked at UCLA. It was flash frozen. It's a miniscule amount (0.17 grams compared to the 2 grams necessary for a DCVax vaccine), but as science progresses less and less tissue will be necessary for personalized tumor vaccines. A little bit is better than none. And if your tissue is stored in paraffin wax, which is the industry standard, it is useless for immunotherapies. 
Okay, that's all I can think of for now. Please leave comments with the things I've forgotten, I appreciate the help. This list is for the sole purpose of helping other brain tumor fighters. We're a small group, and I know that I've learned a lot from my peers.


  1. Thanks for posting this. This is valuable information.

    Two comments: my understanding is that other amino acid-based PET scans, such as FET PET (fluoro-ethyl tyrosine PET) is about equally as effective as F-DOPA in revealing metabolically active tumour. I'm not sure what the availability is though (how many centers use F-DOPA versus FET?).

    Also, in some instances it might be more important to do further genetic and immunohistochemical testing on a tumour sample, rather than keeping it entirely intact, especially if the patient is not eligible for dendritic cell vaccines.

    Having been through a couple surgeries and a partially awake craniotomy, you have valuable first-hand knowledge, so thanks for compiling this list!

    1. Thank you for those points, Stephen! I adjusted the list to include that information. (Even directly copying and pasting a little - hope you don't mind.)

  2. With the title of your page, I was expecting it to have info around what it's like to experience surgery and what recovery is like, etc. It's definitely not as scientific, but that type of info would be helpful for people. Before my surgery, I reached out to a friend who'd had brain surgery already and picked her brain (ha!) for info about what surgery was like.


Related Posts Plugin for WordPress, Blogger...
Back to Top