Gratifying, Frustrating

I was glad to see my old oncologist, Dr. L, today, partly because I really like her, and partly because I had many questions that my surgeon either didn't want to or cannot answer.

And I did get some answers and learned one or two interesting new facts, which was gratifying. But I didn't find out what I most wanted to know, which was frustrating (yes, thus the title). And there was an awkward moment at which I teared up and she actually apologized for what she'd said. More about that in a moment. First, the answers:

1. Was this a recurrence or a new cancer? Supposedly an recurrence is more dangerous because it means the original cancer cells haven't been eradicated, so I'd like to know. The surgeon was quite vague and seemed uninterested in the question; Dr. L, on the other hand, appeared to give two contradictory answers at different points. First she said that my original invasive cancer eleven years ago had been estrogen-positive, and that recurrences of estrogen-positive tumors tend to peak twice (as opposed to estrgoen-negative ones): the first peak is 2-4 years after, the second around ten years. "So I'm right on the second peak?" I said, amazed because I had never heard this nugget of info before (why? did no one want to tell me to avoid alarming me?). "Yes", she said. So that implies recurrence, right? But later she said it wasn't a recurrence, because it was DCIS rather than invasive, and apparently the surgery, chemo and radiation did wipe out the original invasive cancer. This is confusing. Is the 11 year gap from diagnosis just a coincidence?

2. Why were the mammogram and the MRI just after the diagnosis of Paget's both normal, when the path report showed DCIS? Answer: Because I didn't have enough DCIS to show up on the imaging. "After all, the amount you had was minimal," she said. It WAS? No one had told me that, not even the surgeon. I read the path report, and the word "minimal" isn't on there. "No," she said, "But it says 'a few foci of DCIS found', and that means it's not extensive." So that's good, going on great. But you'd think I would have been told that before.

3. What about the dread "dirty margin"? Dr L said I didn't actually have a "dirty" margin, which means cancer found ON the margin of the excision. I didn't know that either. What I had was a close margin, half a millimeter from the incision. Is that as good as a greater margin? No. The bigger the better. But it doesn't necessarily mean an automatic re-excision either. It's a judgement call, as so much else in cancer treatment seems to be. She did add that the path report says only "one of five slides shows DCIS .5 mm from the margin" -- I'd read that but didn't know that one of five is not considered much at all. What do I know?

4. Hormone treatment: shouldn't I go back on it, given that I was diagnosed with the Paget's one year after finishing my course of estrogen inhibiting drugs? Hmm, she said. Hard to say, she said. There's a study being done now about extending hormone treatment for women like you, but we won't have the results for three years. And if it does no good, you run the risk of osteoporosis, higher cholesterol, and possible heart damage for no reason. So she will consult with other oncologists and get back to me in a few days with their collective decision. Apparently majority rules. Another judgement call.

5. Radiation: this isn't up to her. There's no question that radiation prevents further recurrences after lumpectomies, but the standard is not to re-radiate an already treated breast. "The breast tissue usually can't withstand it at the levels needed to eradicate cancer," she said. Nevertheless, I'm to see the radiologist in about a month: she said the one my surgeon recommended is their best expert on this, so that's nice.

6. My prognosis: this is where we ran into trouble..my tearing up, her apology. She repeated several times that the "cure rate" for DCIS is 98%, which is wonderful, but then added that this is after lumpectomy and radiation -- in other words, for first timers..."So if you can't do radiation, you should rethink getting a mastectomy, because that's the gold standard." NOW? I thought. I'm just beginning to come out on the other side of this surgery, which after all was minimal compared to mastectomy (not to mention breast reconstruction, which I hear is even more painful). Am I going to up the ante now? She saw that I was getting upset, and quickly apologized: "Wait, I misspoke," she said, "Decisions about surgery have to be made in consultation with the surgeon. That's not my call. It's just that it's the gold standard."

Ah, the gold standard! Who wouldn't want the gold standard? Why take silver or bronze medals when you can Go for the Gold? The feeling that I am being cowardly because I hate surgery and want to look normal is distressing; the idea of risk, even a small risk, is dismaying. On the other hand, I really, really don't want a mastectomy right now. I don't like making this decision myself, but I also don't know that I trust Dr. L. OR Dr. C. (the surgeon) or anyone to make the right choice. It all seems so much a matter of luck, a cost-benefit analysis based on unknowns. This is the weird and frustrating part. The answer to every question seems to be "hard to say".