11-12-09 – What You See vs. What You Get

The process is under way for me to see my new oncologist, Dr. C, on November 20th. Betsy, one of the onc nurses from my old team, indicated that there was no need for me to see Dr. C *before* my surgery since I have completed the standard chemo treatment protocol for IBC and there are no further medical oncology issues. I insisted that my parents, my children and I do have a medical oncology issue that we need to discuss with Dr. C. So I was allowed to have an appointment with her for the 20th.

But it was subtly made clear to me that in this case (as in too many other cases during the course of the last four months, I must say) this is happening only because I have insisted upon it. Not because anyone besides me (and my family) thought it was useful or necessary.

What we don’t know is how much of this reluctance is “stuff” from Betsy herself as the gatekeeper of my access to care versus how much reflects the feelings and ideas of Dr. C. It was my understanding that with transfer of my care to Dr. C, I would inherit a new team of treatment nurses. That has yet to materialize.

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I had a very good check-in with my surgeon last week. She drew on my breast to show me where she’d cut. It was nice to see how far away her “cut line” is from the remaining redness in my breast. She thinks she can get clean margins by cutting there, meaning that when the tissues along the cut line are examined under a microscope, they will show no evidence of cancer. If she doesn’t get clean margins, she said, we will have to go in and try again, which will mean undergoing a second surgery. Hopefully this won’t occur.

One of the best parts of the visit was when I got a chance to talk with one of her nurses. I didn’t catch her name, which I really regret now. She was sent in to help me with the consent form and witness my signature, and I found her input invaluable. Unlike the nurses on my old onc team, when I spoke with this woman I felt like I was speaking human being to human being—with her being someone who has a lot more experience than I do in the matters we were discussing. I didn’t feel like I was talking to a “health care professional” who was delivering pronouncements from on high to the patient (me) down below. I felt like I was talking to a very knowledgeable peer. I really liked her. I hope I get to have her as a part of my care team in the days and weeks to come.

After this, I went to anesthesiology for my pre-care consult there. As you know, one of my deadly fears is undergoing general anesthesia—being intubated and paralyzed so that I can’t breathe on my own. I had a chance to have a long discussion with the nurse practitioner there, whom I also liked very much. Then I got to talk to one of the attendings there, again in some depth. She volunteered to try to be the attending on my case when I have my surgery, since she was so familiar with my anxieties and my preferences. It seemed like a good idea to me—the familiarity she would bring to my care that day. Together, we worked out an anesthesia plan for me to have a nerve block and very light sedation—just enough to take the edge off. She seemed very amenable to the idea of having me as awake and aware as possible, keeping open the option to put me more deeply to sleep if my anxiety level or my pain level warranted it.

There is a potential hitch, though. When they do the nerve block, if they miss their target and inject the anesthetic into the wrong area between the vertebrae, they could wind up temporarily paralyzing my diaphragm. Which means I wouldn’t be able to breathe on my own. Which means they would have to do an emergency intubation and put me on a respirator fast. Since I will be awake for the nerve block, this means I would be awake for this entire experience, should it happen. I was reassured that it almost never happens, but, given my fear of intubation and general anesthesia, they wanted me to know up front about all possibilities.

I have to admit that I’m stressing a bit about this, and the anxiety is causing me to experience some shortness of breath—a diminished version of the inability to breathe that I find so distressing and am trying to avoid at all costs. Ironic, no?

Despite this unsettling scenario, I left my consult with them feeling very positive about everything. In fact, I was ready to march to surgery right then and there and just get this over with. Having to wait for weeks is too long. Too much time to fret and worry. I wish I could just get it over with.

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One of the standard things they do as part of their pre-surgery work-up in anesthesia is an EKG, just to make sure that your heart is able to withstand the surgery. They did one on me and I could tell as soon as the nurse practitioner looked at the read-out that something was amiss.

Apparently in this day of automated everything, even an EKG is machine read. At least initially. And the machine reading of my EKG indicated “anterior infarct”—a heart attack. The nurse told me that sometimes the machine over-reads these things, and that she would check with a cardiologist to see whether it really did appear that I’ve had a heart attack. Turns out, it appears that I have. (The good news just keeps on coming, don’t it?)

Knowing that I’ve had a heart attack makes sense of some symptoms I was experiencing in late August and early September. I was about 3 cycles into my chemo, then, and began noticing that I had no stamina whatsoever. I was extremely fatigued, and when I would do the least little thing, my heart would race wildly and I would wind up panting. I mean, I had no endurance whatsoever.

I told my (old) treatment team about this at the time, but I’m not sure they believed me. It was too early in the chemo regimen for me to be having such extreme fatigue, they said. But I knew what I was experiencing. I just chalked it up to chemo and my body’s attempt to adjust to it. Over the next few weeks the most extreme symptoms subsided, which again made me think it had just been a reaction to chemo and that my body had adjusted.

Now I think that I had the heart attack then. Since my cholesterol levels have always been excellent, we have no family history of heart disease, and my blood pressure has always been very good, the only risk factors I have for a heart attack are my cancer, the chemo, and my blood clot problems. I suspect that either a piece of the clot in my right calf or else a clot formed around my port (ports increase the risk for clot formation) traveled to my heart and caused the heart attack.

The anesthesia nurse said that she would have someone on my (old) treatment team set up an appointment for me to have another scan—this time one to measure how much damage my heart has sustained. We need the answer before we go to surgery. We’ll probably do another MUGA test, which is a test I took back in July to make sure my heart could withstand taking a heart-damaging drug like Adriamycin. That will give us a basis for comparison—then versus now.

I’ve been waiting for the appointment to be set. Presumably Betsy, the gatekeeper, will be taking care of this, as nurses from my new treatment team don’t appear to be on board with me yet. But it’s been 8 days and so far, nothing.

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Today I had the imaging that I bargained so hard to get. I had the mammogram of my healthy breast that the surgeon wanted me to have—and it came back showing (no surprises here) a healthy breast, just as the CT scan, the MRI and the PET scan from July had indicated.

In return for doing the mammogram, I got an MRI and ultrasound of my diseased breast today, too. This was my effort to verify empirically the glowing reports that I’ve been getting for weeks from Dr. H about what an excellent clinical response I’ve had to chemo.

He has said repeatedly that he can no longer feel the swollen lymph nodes in my armpit, that he can no longer feel the small tumor on my chest wall, and that the skin on my breast looks less red and is not as thick. Taken all together, he says, these three signs indicate that we are ready to go to surgery.

I have been cautiously hopeful on the basis of these repeated assertions of his. But not so hopeful that I’ve been willing to blindly go forward with surgery. I wanted some kind of empirical evidence that what he was saying was true.

Unfortunately, the information I got today from my scans is not quite as positive as the picture he was painting for me. What he saw is not consistent with what we’ve actually got, it would appear. And I’ve been rather depressed tonight. Clearly I’d placed more hope in his reassurances than I have been willing to admit.

While some of the lymph nodes have disappeared, several are still swollen. This could be because they still have cancer in them, or it could be because the chemo caused scarring in killing the cancer cells and the nodes are filled with this scar tissue. There’s no way to know which it is until we take the nodes out at the time of surgery and the pathologist looks at them under the microscope.

I don’t know the status of the skin; I forgot to press for that info. I should have that info when the written report from the MRI is in. But again, even if the MRI shows continued skin involvement, it could be that what we’re seeing is scarring from the chemo and not the effects of cancer (redness; skin thickening). And so of course, once again, the only way we’re going to know for sure is at the time of surgery, when the breast is removed and the pathologist can look at the breast tissue under the microscope.

The tumor is a different matter. I had a small (2 cm) tumor on the wall of my chest at the time I was diagnosed. Today it is smaller (1.3 cm) and looks like it’s “breaking up” (whatever that means; I didn’t ask). But it’s not gone. Unlike skin and lymph nodes, cancerous tumors do not become scar tissue. They remain cancerous for as long as they exist.

So we know right now, even before surgery and pathology, that I still have active cancer in my body. If the tumor is still there and thus cancer is still present, it’s also possible that it’s present in the skin and the swollen lymph nodes, too.

It might seem that the logical response to this information would be, “Then get to surgery and get it all taken out as quickly as possible!” And it would be. Except for one thing:

People who go to surgery and get a pathology report afterward stating that there was no evidence of cancer anywhere in the breast tissue and the lymph nodes, nor were there any tumors, have an improved chance of long-term survival. This is called a pathologically complete response, or pCR.

People who go to surgery and get a pathology report stating that there was cancer in the nodes or the breast tissue, or that there were tumors found, obviously do not have a pCR. Thus, their chances for long-term survival are not as great.

I want to try one more time to shrink the tumor before we go to surgery. But based on what Dr. H kept saying to me and based on what Susan, one of his onc nurses, said to me, the decision has already been made in consultation with other oncologists at the hospital (the Breast Conference) that I will not be given any more chemo **under any circumstances**.

Their rationale is that I’ve had the standard chemo treatment for IBC, I’ve had a good clinical response to the chemo, and it’s time now, according to the formula, to go to surgery. It doesn’t matter what any imaging would show, they will not authorize my getting more chemo.

Will their opinion, then, be changed by the images I had taken today? Back before I requested a transfer of care, I was told it would not be. Will this be any different with Dr. C, now? It’s hard to say—

I have been told that before I meet with Dr. C on 11-20-09, the Breast Conference will have looked at my images and discussed them. This means that Dr. C will probably come into the exam room to meet me for the first time with “the group’s” decision already made, before I’ve had a chance to fairly present my position and make my request.

I hope this is not the case, but I will not be at all surprised if it is.

If it is, I feel like they will be condemning me to an increased likelihood of an early death from cancer, because they will not allow me to try one more time to eliminate that tumor before we go to surgery and thus increase my chances of getting a pCR.

When I was diagnosed, I was given the statistics about survival rates for IBC. But then I was assured that I am not a statistic; I am an individual. No statistic can predict how long I, as an individual, will survive.

When it comes to my treatment protocol, however, my experience so far has been that they expect me to be a statistic. The protocol was developed based on statistics derived from clinical trials involving treatment of many hundreds or thousands of women with breast cancer. I am expected to fall into the “normal distribution curve” for treatment derived from all of that. When I ask to be treated as an individual, which is to say, when I ask for something that falls outside the statistically-derived treatment protocol for IBC, I’m told no—that I’ve had the standard treatment and now it’s time (according to the protocol) to go to surgery.

This, at least, is what Dr. H and his nurses indicated to me. I hope Dr. C has a different frame of mind.

I suppose I could simply refuse surgery and take my cancer treatment somewhere else—somewhere where moving beyond the formula is not as frightening to the oncologists. But there are two problems.

First, there isn’t time. There is a window of opportunity for surgery after chemo has been completed. If you wait too long, an aggressive cancer like IBC will start to recover from the assault of chemo and will begin to spread throughout the breast again and eventually into the body. Valuable ground that was gained, and even new ground, may be lost. The ideal window is to have surgery three to four weeks after chemo has been completed. I will have my surgery (if it proceeds as scheduled) four weeks and three days after my last chemo. I’m already pushing the limits of the safe window.

If I refuse surgery and start looking around for another oncologist who will be more willing to think outside the box, I will be sitting here unprotected from the cancer that we know still exists in my body. No chemo to keep it in check and beat it back. No surgery to remove it. I will just be sitting here exposed and vulnerable.

I either need to start a supplementary chemo regimen right away, or else I need to go to surgery. There is no time to look around, get on board with someone else who operates outside the UNC system, etc., etc., etc. I’m stuck here.

Second, there is the question of cost. The UNC system is a state-run system and thus provides some of the most reasonably-priced health care in the state. Figuring out how to pay for this care is hard enough; I don’t know how I could manage to pay for care from another source (especially considering my impending lay-off).

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I am getting so tired of trying to keep a handle on my cancer treatment and get things that make sense to me—and refuse a few things that make no sense whatsoever—I’m just about ready to roll over and play dead. Give up trying. Let them do to me what they will and if I live, I live. If I die, my blood is on their hands. (Not that they’d accept any responsibility, no matter how bone-headed some of their treatment decisions may have been.)

What does it matter any more? I’m tired of the struggle. Not the struggle against the cancer, but the struggle against the cancer treatment machine. Against the juggernaut that you become enmeshed within when you get a diagnosis of cancer.

I continue to hold out hope that things will be different with Dr. C. But the way things are shaping up right now—the fact that I had to insist on seeing her pre-surgery, the fact that the Breast Conference will have made its decision about my case before I ever get to see Dr. C….it just doesn’t look very promising.

I hope I’m wrong. I hope the juggernaut will die a long time before I do.

But juggernauts tend to be long-lived and tough. There may be no hope. There may be no pony in this pile of manure.