12-1-09 Update – Countdown to Surgery – T-2: I Told You So

At the suggestion of my new oncologist, Dr. C, I got another opinion from an oncologist in Cary, NC. We’ll call him Dr. M. I met with him late yesterday afternoon, after I’d posted my “anger” blog.

Dr. M immediately presented me with three options for courses of action. In my five months of care at UNC Hospitals I have *NEVER* been presented with any options. So this was a first for me.

As it turns out, my desire to have more chemo before going to surgery was a valid option. It was one of the three. Unfortunately, since I have gone four weeks now since my last chemo treatment, the best option for me at this point is to proceed with the surgery.

Had I been listened to by my original treatment team at the hospital, this would not have been the case. I would have received continued care in a more timely manner. But since they ignored my wishes, my options are now circumscribed. Although Dr. M didn’t begin our conversation by positively advocating surgery, by the time our talk was ended he had taken that point of view and promoted it to me.

There is more bad news. The circumstances under which Dr. M would normally advise surgery are different than the ones under which I am going to have to have it.

He advises first doing punch biopsies of the skin of the breast along the line that the surgeon will use to perform the mastectomy. That way we could see BEFORE I go to surgery whether the surgeon will be able to get “negative margins”—meaning the ability to make cuts in the skin where there is no cancer. If the biopsies reveal that there are positive margins at the cut line—that there is cancer where the surgeon would cut—then we would delay surgery and do more chemo in order to try to drive the cancer back further in the breast tissue.

This would be a particularly viable option for me since I’ve been a good responder to chemo. For someone who wasn’t as good a responder, it would not be as good an option. They might have to use radiation therapy, instead, to try to drive the cancer out and achieve negative margins. And of course, that would also be an option for me, instead of chemo, if I wanted.

Doing the surgery this way, however, takes a couple of weeks. If I tried to do this, it would delay my surgery by another week or two, and it’s already been four weeks since my last chemo. Because I’m already out so far from chemo (thanks to my old oncology treatment team’s reluctance to put me in touch with Dr. Dees in a timely manner), I don’t have any more time to waste. The cancer I have is an aggressive type and will be re-grouping and starting to grow again. I have to go to surgery now, without the punch biopsies to guide us.

The good news is that my surgeon, Dr. N, is planning to do a variant of the punch biopsies while I’m on the surgical table. The bad news is, her variant is not as efficient and good for me as what Dr. M would prefer to do, if we had more time.

Dr. N will take tissue samples at four locations along the line where she plans to cut and sent them to the pathology lab for analysis while I’m still on the table in the OR. If the initial path report comes back saying that the margins look clear, she proceeds to do the mastectomy. If the path report comes back saying that the margins are not clear, she will simply cut higher up and lower down on my chest, hoping that the increased distance will avoid the diseased tissue and give us the negative margins we need.

The rub is, she will not try again to take samples at the new location and send them to the pathology lab before she proceeds. She is planning to just cut higher and lower, hoping that she will get clear, undiseased tissue. We won’t know whether she succeeded until the final pathology report is in about a week later. If we did not get clear (negative) margins, I’ll have to have another surgery to try to correct this.

Dr. M says that in his experience, people presenting with the level of redness that I have remaining in my breast right now have a 1 in 3 chance of having positive margins. That means that when the final pathology report comes in, I will have a 1 in 3 chance of finding out that Dr. N cut through diseased tissue in performing the mastectomy, and thus a 1 in 3 chance of having to have another surgery to try to correct this.

Dr. M says that Dr. N needs to have a stop rule in place. She needs to continue to biopsy my breast tissue until she gets clean margins in a location where she can make her cuts to perform the mastectomy. If she cannot get the margins she needs, she needs to stop the surgery, not do the mastectomy at that time, and I need to get on chemo right away. Then, after more chemo, we’d go back, do biopsies, and try the surgery again.

Dr. M said that if I have the mastectomy with positive margins, I will probably have trouble with the wound healing and have trouble getting local control (control within my breast and/or the remaining chest wall) over the cancer.

But I need to go to surgery now, as scheduled, he says. Because I’ve been too long without treatment (again, I would point out, thanks to the foot-dragging of my old oncology team who didn’t want to let me address this question in a timely fashion with Dr. Dees).

That’s not all the good news. (Sarcasm, here.)

Dr. M says that for someone in my position, the surgeon needs to consent me for a radical mastectomy…not just a modified radical. He says that it’s possible they will find cancer in my muscle tissue and need to remove muscle—which is a radical mastectomy. No one has ever mentioned this possibility to me before. He was adamant that it is a real possibility and one that I need to be ready to accept, if it is necessary.

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All in all, I found out that I was right—my taking more chemo before surgery, given my positive response to chemo so far—was a very viable option. But now I’ve gone too long without treatment and need to move rapidly into surgery. A surgery whose procedure has been described to me as not being as highly concerned about getting negative margins as the one advocated by Dr. M. Because we don’t have enough time to do it the way we really should.