I'm really scared for my mother!

Question

Hello, it's me again. Sorry I only write when I need you all! I'm a bit worried as my mother's CA 125 is from 5000 in April to 4500 and she's all proud. She's continuing her chemo, that hte doctors felt didn't work. Anyhow, I don't understand anymore. The fluid in her abdomen seemed not to return, which is a good sign. She really doesn't share much, but could someone please shed light as to what questions I could ask her that she has to answer? I know she knows more and I don't feel it's fair to not keep me posted for my children's sake too. She asked me not to talk to the girls about her illness. I'm worried that in a few months she will pass and my kids won't understand? What is your advice? But why is CA125 so high? You are all constantly writing 35 is high? Is this towards the end of her illness?Sorry to be so blunt, but I'm lost in thought and possibly blinded!
I'm really thankful always to your emails. I find you all so brave. Godbless!

beyondthesea · Answer

Wow...that's a tough one. How is she feeling right now? Is she pretty weak or still feeling somewhat strong? Is she living alone? 

Both of my inlaw's died of colon cancer, and they were both kind of in denial of the seriousness of their situation. And part of it was that they didn't want us to worry, but they sure didn't say much! However, they DID tell their oncologist that we had permission to ask him any questions we wanted, so we did! That's how we found out how bad they really were. 

Can you get your mom to give you permission to talk to her doctor? (I'm guessing you're in the US, where the new laws require the patient to give consent before they'll give out personal info to anyone else.) 

Take care, and hang in there!

Chris

SM2006 · Answer

Thank you so much for your reply!! I'm not in the US, however she is in NYC and is at Sloan Kettering. I'm quite far away. I've asked if I could contact her doctor, but she feels it's not necessary. I ofcourse feel it is. She seems to tell me she's very strong. She can eat well and is seeing friends. I just wish I could know the seriousness of the CA125 being SO high. Why is it not going down? Could it mean it's spreading? Isn't the CA125 supposed to be the cancerous cells in the blood?I wish someone could just be honnest and tell me what lays ahead for us. I would relocate my family if I knew more...

dian07 · Answer

I would agree with you....the ca125 is quite high and not a good sign.  Has your mom told you not to talk with her doctors?  Seems to me, if she realises how difficult this is for you she would allow her doctors to talk with you about her prognosis.  Still, she says the quality of her life is good...that is wonderful!  This is a very difficult situation for all .....I can see your need to know....and, I can understand your mom's need to not be a burden,to not interrupt anyone's life, to remain in control and to not bring pain and fear into the lives of her children and grand-children...my dad wanted to be remembered as he was when he was healthy...not like he was when he was dying.  It's such a personal thing....perhaps when she is ready she will let you in more...all we can do in some situations is take it day by day...this just might be one of those situations. 
Peace to you and your family, and especially to your mom.
dian

I'm really scared for my mother!

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