My story: I developed breast cancer over 10 years ago. 3 years ago my cancer spread to my brain (The rest of my body is completely healthy). During the past 3 years I have had no new tumors appear, and several have actually been eliminated. There are two tumors that go dormant, then decide to flare up. They are extremely slow-growing, giving me a much better chance to completely eliminate them, as well as a good chance for a long life. Currently, the insurance company will only approve whole brain radiation to radiate everywhere on the brain "in case" the cancer decides to spread to other areas, even though it has not done so in 3 years! Currently, I am operating at 100%. To see me, you would have no idea that I have cancer. Whole brain radiation can have extreme side effects including hearing loss, loss of memory and speech functions, seizures, swallowing difficulties, etc. These side effects actually grow over time and get worse after a year or two. Some people actually become completely debilitated. My insurance company states that these are acceptable side effects. Whole brain radiation can also only be done once, meaning if a tumor grows back my options would be limited.
My brain radiologist NEVER recommends PARTIAL brain radiation, but in my case he is actually supporting me. His colleagues are shocked that he is even considering this but it tells you how unique my situation is. I do not want to be an insurance companies "standard of care". I am a unique person and cancer has affected me in a unique way. Proton Therapy is even better than doing partial brain radiation with traditional radiation because you can control how far into the brain the radiation goes. With traditional radiation, the radiation enters one side of the head and exits the other side, killing the tumor but also damaging other portions of the brain. With Proton Therapy, the radiation enters the brain, travels through the tumor, then can be stopped, saving as much healthy brain as possible. As I mentioned, I am operating at 100%, teaching yoga to my friends, taking cooking classes and cooking healthy vegan meals for my family. I am very active and can't imagine how my life would change if I had to do whole brain radiation. We have appealed to my insurance company several times and continue to do so, but no one has ever done Proton Therapy to someone with breast cancer brain mets so there is no data to go on. Please consider helping me fund my treatment. No amount is too small and every single penny is so greatly appreciated. Thank you.
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