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" There are other amino acid-based PET scans, such as FET PET (fluoro-ethyl tyrosine PET) which 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?).
- 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 for studies, that it remain in tact for your own use. (Whether that means for an immunotherapy in the future or for your own genetic or immunohistochemical testing.)
- 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.
A brain tumor diagnosis is overwhelming. It's hard to know what to do, which steps to take, who to trust, but know that the majority of patients who fare well choose to do a strategic combination cocktail of treatments as opposed to single agent options. The reasoning, is that cancer is a multi-faceted disease with many variables (like angiogenesis, mutations, etc.), and by utilizing off-label drugs, immunotherapies, nutraceuticals, whole body wellness (including diet, exercise, meditation, etc.), and sometimes, standard of care (radiation & chemo). Every single tumor is unique, no two are the same. Because of that uniqueness, you really need to personalize your protocol. Educate yourself, and listen to your body. Just as no two tumor pathologies are the same, nor are two people the same. So it gathers to say that no two cocktail approaches should be the same. This is the time to take control of your health. No one has as much incentive for you to live, than you. Be your own advocate, and look for doctors that will work with you, not just tell you what to do. And remember, there is no one person that has all of the answers.