Imagery for your brain
Hello cancer-cousins,
Before I start, I believe four things are key to a cancer patient's survival:
1) fight - don't give up, don't give in, when you get knocked down, stand back up. Much of this process is mental and if you can get through the mental fight, your body will come along for the ride.
2) love - share your scenario with your friends, family, neighbors, and coworkers. Be open and share your journey. It will bring you closer to everyone and everyone closer to you.
3) laughter - Your situation is serious, but life is still filled with laughter. If you stop enjoying life because of how serious one part of it has become, I believe you'll further reduce your survival chances.
4) Treatment - This is important, and not just because of the medical necessity, but because you have to take control. Your doctor has more than just you to work with, and he or she has to balance standard care practices with tumor boards and hospital politics. While you might be best served by going to a facility in New Zealand to try a new drug trial, it isn't likely going to come up in your monthly appointment. You need to be on the Internet weekly, at a minimum, learning how your current treatments work, and how other treatments might help.
Unfortunately, you need this information, but fortunately, I'm here to help. I was initially diagnosed in 2006 with an oligoastrocytoma of the right, parietal lobe. At that point, things like "CT" and "MRI" started entering my vocabulary, but I didn't have a clue what they meant. Over time, I started learning new terms. I had 9 years off from cancer, but it came back. I'm fighting again. As a mega geek, I have a tendency to over-learn what I need to know, but as a brain cancer owner and operator, I also recognize that I only need to share what is necessary:
Computed Tomography (CT) - Great for quick scans using x-rays, but tumor identification is difficult. If discrepancies such as edema, calcification, hemmorhaging, or other distortions are noted, an MRI is often ordered for more clarity. Somewhere along the way, CT scans gained the nickname "CAT scan."
Magnetic Resonance Imaging (MRI) - These take a little longer, usually 30-90 minutes, and some people don't handle the confined space too well. I'll tell you right away that you can ask for them to turn on a fan to get some air moving through the tube, and use lights to your advantage (on or off). Don't forget to get those ear plugs in there really good. That can make a really big difference. If you feel like you'll be nervous, do what I do, close your eyes before you get shoved in the tube, and never open them. There's no reason to do so. If you go in there and you're really tired, you might even fall asleep. If you're certain that you'd have problems, most doctors will prescribe something to relax you for the duration. MRIs are noisy (earplugs), and you can't wear jewelry or anything else that could react to the powerful magnets, but they excel at identifying structures within the brain. MRIs can be administered with or without a contrasting agent. This agent is usually gadolinium. By using contrasting agents, T1 or T2 weighted images can be created. From my understanding, this is just a way to enhance white matter, grey matter, or certain tissues. It helps the radiation-oncologist tell the difference between good brains and icky brains.
functional MRI (fMRI) - These are cool. I've been through one of these. I laid in a regular MRI and I performed hand and foot tests, along with speech tests while in the MRI. Afterward, the computer scientist was able to show me the nerve fibers that ran from my motor cortex, down through my brain toward my hands and feet. This is the type of test that would be done before surgery, to make sure that these fibers wouldn't be severed.
Positron Emission Tomography (PET) - In the field of neurology, this scanner works on the premise that activity in the brain will consume radioactive tracers based on blood flow. PET scanners do not emit anything; rather, they absorb radiation coming from the tracer administered to the patient. Specifically, the primary tracer used for brain cancer is FDG, which is basically radioactive sugar water. To quote my nuclear radiation technician, "cancer loves it some sugar!" When loaded up with FDG, you get to wait for an hour in a dark room, followed by a 45 minute scan in a quite machine that feels more like a CT scan machine. For some sites around the world that have their own cyclotron, they are able to make radioactive tracers onsite. I was able to receive Methionine in addition to FDG, so both tracers helped define the area of my tumor. Many people are concerned about radioactivity of these tracers, but you probably get as much radiation on a cross-country flight in a commercial aircraft (probably).
These are the ones I'm most familiar with, but I also need to mention two final things:
1) After every scan/image/etc, ask for a copy. Always get them, request copies, etc... If they want to charge you, you should be able to request them for free if you tell them you're taking them to another doctor for a second opinion. I have ten discs that I have gotten that way and not once have I lied because I don't sit around and look at them at home, or post them on some personal web-page. Make copies of the discs and get them to other doctors I meet along the way.
2) Imagery fusion. Your doctor(s) may find it necessary to fuse your imagery. That's where they have one type of scan fused with another type, helping to further delineate boundaries. This is a great idea, but may only be necessary when a neurosurgeon wants to attempt a resection.
Good luck to you!
FIGHT, LOVE, LAUGH, TREAT!
- Josh
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