I have been trying to find information on the progression of NSCLC and all I find are really general statistics about the 5 year survival rates.
I'm really looking for real life examples of how this disease progresses. My dad was diagnosed with stage IV NSCLC over a year ago. He's been getting chemo and we get very generic and often very cheery (in my opinion) explainations of the results of his CT scans from his oncologist.
Oncologist: "Good news, the cancer hasn't grown or spread" Me: "Has it shunk?" Oncologist: "Well, no, but it's not gotten bigger or spread"
I don't know if that's good news or if he's just being pleasant - I really can't read him. And my parents are kind of "head in the sand" people, so they just go with the flow, but I'd like to know what we are facing.
My dad isn't a learned man and he doesn't know how to use a computer to get information about his disease, and he's not really interested in researching it. I've been trying to find information for myself, but all I see are the survival ("I beat cancer") stories or the grief stories after the fact.
Not everyone beats cancer. For those who don't, what are the "signs" that we should be going on that family vacation or that we need to start looking into hospice. I own a small business and need to be at work, I really can't have this crash on me, I need to make plans so that I can take care of myself as well as dad and mom. When my dad goes, my mom probably can't live alone (she is prone to falling). And because they "don't want to know", I will be left dealing with loss of dad and the uncomfortable task of telling mom she can't live alone. If I just had a timeline I would feel more incontrol. I understand that not everyone's journey is the same, but are there some signposts along the way?
For example, after 2 rounds of chemo, my dad's blood levels have been so bad that he couldn't get his next treatment. Is that a sign that things are going downhill? At this point where tumor shrinkage is stagnated, is that typical of someone who has 6months or 2 years left? I don't feel like I can ask these questions at the visits with the oncologist because my parents truely don't want to know. I feel like they have a right to stay in the dark if they want, and I don't want to ask questions that may sound like I am thinking only of myself. However, I don't think I should have to feel guilty for caring about how this affects my life.
I'll be grateful for any information around this sensitive subject.