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Posted

Hi everyone:

My mom has been battling Stage 3b (now 4) nsclc for one year now. Up until now her symptoms have been very manageable and in fact, she has pretty much carried on business as usual (still working, exercising, etc.) She just enrolled in a phase 2 study and either this drug is giving her serious side effects, or it is coincidence that she is now experiencing vision problems, head pain and pressure, and fatigue. She is terrified of the cancer spreading to her brain but everything I read says these could be signs of that. She has not had an MRI of the brain since she was first diagnosed one year ago.

My question is, how do I suggest she might want to ask for a brain MRI without making her freak out about what that might mean? I thought about calling her doctor without her knowledge but that doesn’t seem right either. Any ideas?

Thank you all for the amazing support you’ve given out to everyone.

Posted

I'm so sorry about your fears, and your torment over what to do. I totally understand, as my mom wants to know as little as possible of the truly frightening things that she is so bravely fighting. On a recent appointmentI asked a bunch of questions when my mom was not in the room. One was, why haven't we done another brain MRI? The answer was that there was no indication of a problem, because no symptoms. Two weeks later, on a CAT of her neck for a new mass in that area, 2 brain mets showed up. Had there not been a neck tumor, would they have found the brain mets? It makes me wish I had TOLD the doctor to schedule a brain MRI, just in case, not asked. Every step of the way 'you' have to be responsible for your own tx. And, I think family is included in that 'you'. Anyway, that's my feeling on it. I wish you all the best in this trying time!

Posted

I agree with jenniferann. You must be a strong advocate for your mother. She is fighting this disease the best way she can and cannot be her own advocate. Since there appears to be some progression, a second (or third) opinion would not be out of line. I think being a good advocate doesn't necessarily mean riding roughshod over your Mom and her wishes, or her medical team, but you should be able to have your questions answered and your issues regarding your Mom addressed by them. The doctors are used to it and will not be offended. Good Luck & God Bless

wendy

Posted

Hi, my mom sounds a great deal like yours. She actually prefers I ask all the questions for her. In any case, I think you should definitely ask to have the MRI scheduled. If they find something, I believe it is very treatable and if they don't at least you'll know you looked. Maybe you can either call the Dr. or speak to him alone and he/she can bring up the MRI to your mom. Good luck!

Shelley

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