Memory loss from PCI

[Topher]

Hello, so my mom is an SCLC survivor. We are now just over five years since her diagnosis and she just got a clean annual scan today. I thank God every day that we still have her. And because of that it makes it hard to bring this up because I should be happy we have her alive and mostly healthy but I wanted to talk about memory loss due to PCI. My mom was given prophylactic cranial irradiation (No Brain Mets) along with aggressive chemotherapy. She was told of the possible side effects both short and long-term but my mom thought it would be worth it if it kept the cancer from spreading. About a year after her treatment I started to notice a change in her behavior. She didn’t laugh at jokes as much (I later found out that she doesn’t get jokes anymore - I have to explain them to her and she doesn’t think they are funny) she would forget something I said three minutes earlier In a phone conversation and then get mad if I brought it up to her. I tried getting her to talk to her oncologist about this to see if there’s anything she could do or any medication available to help but she was in denial about it or she just couldn’t see it. Now, four years later She can’t process a lot of complex situations well  and her short term memory is not great at all. You can’t bring it up to her. She gets very defensive.  Again I’m happy to have her here and this is not me complaining. I just want to try to find a way to help her get her cognitive functions back if that’s even possible.  I don’t know if anyone else has gone through this or dealt with it with a loved one but any advice would be greatly appreciated? Thanks in advance. 

[Tom Galli]

Topher,

Oh my, possible PCI side effects is disconcerting indeed. 

Thankfully, I've not had either SCLC or PCI. Note however, whole brain radiation is a treatment performed for both NSCLC and SCLC. The prophylactic variety is normally limited to SCLC because of small cell's tendency to metastasize to the brain. That said, I've known many who've had whole brain radiation and of those only one who experienced a side effect.

The person I know with whole brain radiation side effects has minor balance and stability issues. Her cognitive abilities do not seem to be affected.

What can be done? I'd press your mother's physicians (oncologist or general practice) for referral to a neurologist. Testing may reveal the symptom cause and treatment. You'll need to find a way to convince your mother that an evaluation is warranted. That might be a hard sell. But there cannot be a remedy without a diagnosis so a neurological evaluation is likely a required first step.

Stay the course.

Tom

 

[BroFTW]

Perhaps your mom is worried or anxious going to oncologist again, which is understandable, out of fear of recurrence and of course the past ordeal, so maybe you can suggest a general practice doctor that would send you to a more specialised practitioner as neurologist, as Tom said.

[TJM]

Wow. I hesitate to post this.

 

Last meeting with my oncologist my wife tells me it was our best ever. He explained he was Aspergers and that is why he seemed distant. Related a bunch of personal history. Middle of the week. Middle of the day.

I DO NOT remember anything. Very disconcerting. I did not have whole brain radiation. To say I am concerned long term is an understatement. I truely hope that fate is not my future. Strength 

Peace

Tom