@californiazebra so generous of you to tell your story. It will help others for sure.
I believe the Oncotype was relatively new even in 2015 when I had my diagnosis.
Lymphovascular invasion can be "focal" or "extensive and noone even told us then which it was. I had to ask. Docs never mentioned LVI at all, in fact, nor did they mention ki67%
Are you dealing with a recurrence locally of the original cancer, or metastasis?
I am so sorry. Nowadays even without the Oncotype I think people are told that hormonal meds reduce risk 50%, when ER is positive enough. You were maybe a victim of the guidelines for practice being behind the research.
I have been upset about medical notes, my own, my kids, my mother- totally get that. You did NOT decline, you complied.
@windyshores -- Thanks for your response. They have diagnosed it as advanced breast cancer, metastasis, since it came back in my chest and muscle. That's why I'm on Kisqali (and letrozole this time). But at least I found the lump on my bony chest before it spread to all my organs or I had symptoms. They likely would have caught it in the ultrasound I already had scheduled for two days later. I'm better off than many women with MBC as far as advancement, but the big concern is how aggressive it is this time (triple what it was last time).
When we discussed MBC treatment, I said, "Just for the sake of argument, what would happen if I did nothing?" He said, "It's so aggressive, it would be everywhere in months." Yikes. Kisqali isn't expected to work forever, but it all does make you cherish every day more than you ever did. So, like others have said, it's a blessing and a curse. We'll focus on the blessing part. 🙂
I think you may be right about them not being caught up on everything. It was a breast center, but my current oncologist is part of UCLA, but local to me. The oncology world changes rapidly for sure.
I'm betting we're not the only ones surprised by the notes. When I read the doctor's notes, any doctor, I see, "We discussed x, y, and z." I think, "We did? When?" Or I tell them I'm having a problem with x and their notes say, denies any issues with x. What? I think sometimes they don't do their charting till night after they've seen 20 patients that now all blur together. Once I read about all the vaccines I just had and it turns out they logged notes for the patient after me under my file. That's scary. Portals are convenient and eye opening!