Nancy, After initial dx I got ev 3 mnth comprehensive bld tests. In Jan '98 my doc called and said EVERYTHING IS GOOD. Good, I echoed. Well, you just have slightly elevated liver enzymes, but it is very slight. I wouldn't worry about it. Okay. End of conversation.
3 mnths later -- same exact discussion. What could be causing that?, I asked. It could be a lot of things, your cholesterol med, a lot of things. I wouldn't worry about it. For me, it hung in the air. I do not like any of my #s not being within *normal* range, even slightly off. I question them!
July '98 -- same scenario. I took charge. Can I have a liver sonogram? You mean an abdominal sonogram. (He thinks.) I guess we could substantiate that (was he thinking about the insurance co. paying?!). I'll write you a scrip. Do you want to make the appt or should I have Renee do it. I'll call. I went for sono. Radiologist apologized but said he couldn't be sure what he was looking at. (I think he knew.) I have to send you for a CT scan. I'm sorry. Not a problem, I thought, better to be sure...
CT scan results came a few days after being taken, doc called and said, *abnormal* cells. I was waiting for MALIGNANT / BENIGN. Hanging by the phone. My husband calling every half hour. Why don't you and Paul come in this afternoon and we'll talk. I called Paul and reported. What does that mean?, he asked me. I didn't know. I was guessing *pre cancerous* cells, hoping, ever optimistic. My tumor markers were *normal*.
I was told I had multiple tumors in the liver, most likely malignant. I was already 4th stage metastatic ILC (w/2 nodes out of 18). Liver biopsy confirmed the worst. I CAUGHT IT! Months before tumor markets started to climb. I can't go by tumor markers, onc told me for future.
What you have is inoperable, incurable and you will be on longterm chemotherapy for the rest of your life. Well, inoperable was good, keeping me strong for the chemo. Incurable, okay, ca is a *chronic* condition, must be watched vigilantly, but they have many weapons in their arsenal to *control* it. You just have to find the right recipe for you. And longterm chemotherapy turned out to be longterm *monoclonal antibody* which is a cake walk compared to... So I called a miracle to me, lousy prognosis, less than 15%... Shocked I'm still here. That is *they/the docs* are shocked. I felt confident, full of faith, that I would be in that little group that survived. I believe with all my heart that attitude, and what we think all day, calls our desired destiny to us. I wish every woman on this board NED. I send my Sisters love, compassion, prayers, admiration, gratitude and awe...
ANDI 