Warning: Prophylactic Brain Radiation

[Borgieskid]

To all who are considering preventative brain radiation, please beware! My Mom had small cell lung cancer, did chemo and radiation and believe it or not, at the age of 74, her cancer disappeared! The doctors were doing "research" and convinced us that should the cancer come back, it would most likely go to the brain. They then talked us into "prophylactic brain radiation". Mom went twice a day for a few weeks. She was fine for about 3 months, then had problems with balance, dizziness, later progressed into difficulty walking. The brain damage was obvious when she had to be put on Ritalin, just to be able to respond to conversation! So the treatments worked, she was "cured" of the cancer. But the preventative radiation eventually killed her. Please ask the difference between "treatments" and "research".... It could save your life.

[rosilita1]

i am sorry about your mother. i total agree with your position. there are studies form mayo which document terrible side effects from pci in people over 65, along with that if she had had a reoccuence in her brain it would have been that much harder to treat, as you know the brain can only take so much radiation. if it was my family member i would only consider it if the person was under 65 and they had acheived total remission(not partial), because in the end figures show it makes little difference in the actual 5 year survival rate.

[Borgieskid]

Rosilita, thanks for your reply. Mom was part of a "research" study while doing the brain radiation. She did achieve total remission, but sadly the radiation negated that! I hope everyone gets the word!

[rosilita1]

i think doctors rely to much on '"research" as they are so desperate to help people with this disease.so hung up on it they don't see more simpler answers. they know when it reoccurs it is often in the brain. they know that they can put over 80% of patients into remission in their first round of the fight with sclc. instead of pci which makes little difference i really don't understand why during their patients checkups whenever they have them on the table such as in a catscan why the brain is just aumotatically checked for mets. beleive me doctors don't do it. they usually will recheck only the area where the original tumors are. it dosen't take much to just go up further and recheck the brain while you are already on the table. i think that should be done especially during the first two years after going into remission. once again, sorry for what happened to your mother, but the subject you brought up is important issue in sclc treatment, and many doctors i think, reccomend pci purely out of frustration.

[Borgieskid]

Rosalita, you are sooo right! Fortunately, Mom was at a National Cancer Center Institute facility and they did regular ct scans and mri's. There was a point when they said, come back in 6 months for another ct, we demanded it sooner and they agreed. Sometimes, you have to take the upper hand and not just blindly follow what they tell you!! We all need to be better informed about the disease, all treatments, all clinical trials, etc. Then we need to be able to "speak up"!!!! Voice our fears, our opinions, our questions... And not be afraid to "shop" for another doctor....