My oncologist tried to stop my chemotherapy* treatment last week because of a one-page synopsis he had read regarding my recent MRI, which mentioned that one of my brain tumors had progressed. It turns out he had never actually looked at the MRI itself; and the specialist who wrote the synopsis had not actually compared the new images to my previous MRI from 2024. I was skeptical, as my symptoms had not progressed; so I asked my oncologist to show me a comparison of the two most recent MRIs, to demonstrate the growth. So, he brought them up on his screen and showed me a clear difference between image on the left and one on the right. "But the one on the left is the 2017 MRI," I said. "We both know the tumor has grown since then." The doctor was surprised, and said, "You're right. I'm not sure why the 2024 MRI isn't showing up." Anyway, we had to go to a different room and use a different computer to find last year's images. When my oncologist finally brought them up, he realized there was a clear REDUCTION in the size of my tumor, as well as a loss of contrast, indicating that the tumor was dying. So, the chemotherapy was working after all! Had I taken my doctor at his word, and stopped my chemotherapy, I would have soon needed an extremely risky brain surgery that would have changed my life forever. We are living through a crisis of competence in America — or is it in the world as a whole? It is absolutely essential that we remain vigilant and look out for our own health, because we apparently can no longer trust our doctors to do it for us. Remember to ask questions, get second opinions and, above all, don't just assume that your doctor is infallible. Now more than ever, your life is in your own hands.
*I have Neurofibromatosis Type 2, with two massive non-cancerous brain tumors on my auditory nerves that are significantly compressing my brain stem. I also have about a dozen tumors along my spine, of various sizes. I had radiation treatment on the larger of the two brain tumors in January of 2000, which miraculously controlled their growth for 20 years. During the pandemic, however, I was not allowed to see my neurologist for nearly three years because the hospital would not let him speak to me without a mask (I'm hearing-impaired, and need to read lips to communicate). When they finally lifted the mask requirement, they told me he was no longer my neurologist because I had not seen him for over 2 years. He had been my neurologist since the very beginning, and knew my entire case history, so I was loathe to make a change. Finally, in 2024, I began to have trouble swallowing. I knew immediately what this meant: that my larger brain tumor had begun growing again. I managed to find a neighbor who worked for the hospital, who was willing to go through back channels to communicate with my old neurologist—who immediately contacted me when he got the message. My neurologist brought me in a couple days later, immediately scheduled an MRI, confirmed the growth, and began planning my current treatment.