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Anyone had radiation on their central nervous system?
Lung Cancer | Last Active: Nov 25, 2025 | Replies (10)Comment receiving replies
@flusshund As I understand it, its my whole CNS that will get radiation. The goal is to bring down the amount of cancer in my CNS and not actually get rid of it with the hope to buy me more time. The list of expected side effects is daunting. I had radiation on my brain when this all started, a spot that was causing severe headaches luckily that went OK for me. They expect energy loss, digestion issues, memory loss, hair loss, and they said it will likely effect being able to do my job. Things like math will be difficult also. My Dr said it's not something they advertise doing, but in my case might be worth it.
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@codym, my heart goes out to you. This is so much to carry, and I’m really sorry you’re facing all of it at once. Whole-CNS radiation is a huge step, but it’s also a step taken with the hope of buying you more time and creating space for better days ahead.
Have you had a second opinion yet? Sometimes another set of eyes can offer options or reassurance you didn’t know you needed. And do you happen to have a targetable mutation or be on a targeted therapy? I’ve seen people get real, meaningful shrinkage and stability even after tough news, so I always hold onto the possibility that treatment can still push things in the right direction.
I’ve never believed in guessing our expiration date; as Olivia Newton-John, a 30-year breast cancer survivor, said, it doesn’t serve us. What does serve us is holding on to hope, taking the next step, and letting others lift us when we need it.
Please keep hanging in. We’re all here, rooting for you, every single day.