Post-op appointment, and more unknowns

It seems like every time I learn something about what's happening inside my body, more unknowns pop up!

But first, let me say that I had my post-op appointment today and I would say I got an A on it (if they gave grades, that is). I met with the nurse practitioner, since Dr. Skinner is out of town this week. Mercifully, she delved right into the pathology, so now I know a little more about the cancer that was in me. Read on, and you will know, too!

The amount they took out was much smaller than I was told - only .6 centimeters. (Radius? Diameter? I don't know.) The cancer-free margins all around were big enough that no more surgery is needed. The diagnosis has changed from straight up DCIS (ductal carcinoma in situ) to mammary carcinoma in situ, because there is some lobular CIS mixed in there. Lobular CIS is not actually full blown cancer, though it could presumably develop into such. Either way, the "in situ" piece means that it has not broken through the wall. It is all contained in the milk ducts and is not invasive. Good news! The stage (how extensive the tumor is) is technically zero, and the grade (how aggressive it is) is 1/2 (3 is the worst). (Stage 1 and 2 have to do with the size of the tumor, stage 3 is in the nodes, and stage 4 is in another organ.) The cancer is estrogen receptive, so it is sensitive to hormones. I could take something like Tamoxifen, an estrogen blocker, as a preventative, but I can't get pregnant on it, which is definitely on my to-do list after next summer. I think there are some other options available, though, for drugs.

As for the surgery site itself, there is no swelling (though the incision from the week before still has some fluid). It has no bruising and is healing really well, despite being unsightly. (Between this new scar, the scar from my site select procedure on Sept. 17, and my old scar from my port-a-cath in 1999, which is just under my boob, I like to call it, "Franken-boob." Michael told me I shouldn't put my boob down like that. What can I say, I process things through humor. It's sort of an endearing name, no?)

So that's all the good stuff. Here's the more complicated stuff. I finally brought myself to do some reading, and have read in multiple places that people who have had radiation to the chest previously should not have radiation to the same spot again. Well, that would be me. The nurse practitioner did not feel comfortable addressing that concern herself, but said it would be discussed at the Tumor Board on Monday. (I don't know why, but the name "tumor board" strikes me as funny. Anyone else?) The radiation, while scary since it is what triggered this bout in the first place, actually increases the survival rate, because it catches any stray cancer cells that surgery might have missed. Is it worth the risk either way? Dunno yet.

The other thing is that I hoped to get this all done before Christmas, both for financial (insurance) and professional reasons. We are already pushing it. But then the medical and radiation oncologists that Dr. Skinner normally refers to can't see me for a consultation until Oct 31 or later, which really pushes it out. So we have set up appointments with a couple oncologists at partner hospitals, and I will meet with them in a couple weeks. I'm grateful they were able to get me in. But I feel a little uneasy because, although I have heard only good things about all the breast care centers around here, I was feeling really good about my care at Strong, and about what people had told me about the doctors at Strong that I would be working with. So I'm trying to sort through that and shift my thinking, and convince myself that it wasn't a mistake to push being done by the end of the year.

The other thing that threw me for a loop was that when the scheduling girl called to tell me what she'd set up, she said, "You'll meet with Dr. Marcia Krebs to discuss chemotherapy." I quickly corrected her, saying chemo was never one of the options for me. But she said it was a consultation for the next steps, and chemo was one possibility. Did she get her signals crossed? Or is chemo a possibility if I can't, in fact, have radiation again? The receptionist, of course, wouldn't know. I had really settled into imagining that radiation would be next, and now, again, I have to shift my thinking. I will do whatever it takes, of course. But between this and the doctor shift, I'm feeling a little unevenness of the ground beneath me.

All in all, though, a good appointment. And I might just get all week next week with no doctor's appointments! Huzzah!