Radiation on CNS

Posted by codym @codym, 2 days ago

Has anyone had radiation on their central nervous system? Starting to look like I might need it, cancer spread to there and took away control of my face it sounds like swallowing will be the next thing to go. After hearing what radiation to my CNS will do it sounds pretty bad. Local clinic can only do photon radiation, Mayo can do proton which according to my radiologist is better for short term side effects. It's hard to know if these lesser side effects justify spending two weeks in Rochester. Especially if I don't have much time left not sure how bad I want to spend it in a hotel room.

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Do you have to go through radiation to treat the cancer in your spine? I can’t imagine that this is your only option, have you tried to get another opinion to be sure because otherwise you could ask for trials that might help you without causing too much damage. I sincerely hope that you can get more information about this and perhaps more options, please don’t give up on hope and I will pray for you to be well soon.

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Hi @codym, These decisions can be so difficult to make. I always feel more confident with my decisions when I have all of the information that I can gather. Through your cancer treatment, have you had a second opinion from a thoracic oncologist? If not, it may be time for that. In another post you mentioned that your oncologist didn't paint an overly optimistic picture of your future days. There is often a fine balance between being realistic and being hopeful. Try to lean toward the hopeful side. I know you are likely tired of the treatments, and exhausted. You seem to be young, strong, and healthy other than that pesky cancer. Are they proposing radiating spots in the brain, or other area/s? Know that many people go through brain radiation and still survive for many years.
You need to make your own choice. If/when I'm in your shoes, I'll be looking for a second opinion, with a lung cancer expert (even an expert in the field of my specific mutation if possible). I find that those experts often have a hopeful outlook.

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hi @codym - it must be very frightening to think of losing your ability to swallow. I agree with @frouke and @lls8000 that getting another opinion seems prudent. doctors are not infallible. may I ask what kind of lung cancer you have?

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