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Testing, Testing...Playing the Waiting Game

The following article is excerpted from Chapter 8 of Advanced Breast Cancer: A Guide to Living with Metastatic Disease, 2nd Edition, by Musa Mayer, copyright 1998, published by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

Living with a life-threatening illness that is likely to return or worsen at any time is a waiting game anyway--but it is testing that often forms the focal point for anxiety. Medical testing is an integral and unavoidable part of the landscape of metastatic breast cancer. Tests monitor the progression or remission of the disease, and the success or failure of treatment. Oncologists use the information gleaned from tests to guide their recommendations. Some tests are painless and non-invasive, involving drawing blood from a port or taking an x-ray or scan; others, like liver and bone marrow biopsies, are quite invasive and can cause considerable pain.

But every test, difficult or not, evokes anxiety while waiting for the results. What is a routine aspect of daily life in any medical laboratory or doctor's office is far from routine for you, since the results can alter the course of your life. Some providers are sensitive to this, while others seem largely oblivious what it's like for cancer patients to undergo tests and wait for their results. Sometimes, you can make a difference by making your needs known. You can arrange to get the test results before the weekend, for example, or arrange a time in advance when you can contact the doctor.

Cindy Wirth was 34 years old and had just given birth to her second child when her breast cancer was diagnosed at Stage IIIB in 1991. Despite aggressive treatments, including Cytoxan, Adriamycin and 5-FU, the cancer soon spread to her supraclavicular nodes and lung. Two years after her original diagnosis, Cindy underwent high-dose chemotherapy, but again the cancer recurred within a few months. She qualified to participate in a Her2-neu study and traveled from Illinois, where they lived, to San Francisco for ten consecutive weeks to participate in it. Her husband, Gerry, reported that while he certainly did have to spend more time running interference with the children during parts of her treatment cycles, they actually managed to maintain a semblance of ordinary life during almost all of this time--except for one particular point in the treatment cycle.

It all became normal…except for the every-cycle chest x-ray. That is how we knew the treatment was working. She would get it done on Saturday so the oncologist would have the report on Monday, chemo day. The weekends were such hell that the oncologist showed Cindy how to get a recorded report on Sunday. Every time you always wondered if the spell was broken.
Sometimes it seems as if the procedural bureaucracy of hospitals and clinics must be designed to make things difficult. Nearly every woman in this situation can recall some story of tests results lost, delayed or otherwise mishandled, and of the emotional cost to her.

As outspoken and unafraid to advocate for herself as anyone I interviewed, Lucie Bergmann-Shuster has put her finger on what it is that makes the process of testing so excruciating:

I wish I knew the answer for a fix on this kind of emotional pain. I go through it every time I have a battery of tests done. The waiting and the uncertainty is just so devastating. I have told my doctors that this kind of pain is worse than any physical pain I have ever experienced.

All I can say, that once you get the reports back, the gnawing, mind twisting suspense will be over. Even if the results are not in your favor, at least you will be able to go on to chart a new course of action. It is the infernal wait that kills us. Let's hope that there will be some positives in the results, but at least the waiting and the suspense will cease.

In and of themselves, of course, almost all tests, including biopsies, are minor procedures, and are frequently treated offhandedly by medical personnel. But because these tests are intimately tied to revelations about the course of a life-threatening disease, the entire process can take on enormous emotional weight. This discrepancy between your subjective experience of the testing process, and the routine, often depersonalizing way the process is handled is a source of much unnecessary distress.

As a high-risk patient two years following intensive chemotherapy, Ellen Scheiner has found that one way to minimize anxiety is to have blood drawn a week before her quarterly checkups, so that the results are available by the time she visits her oncologist. Despite the inconvenience, she finds that this simple act of foresight permits this visit to be both definitive, and reassuring.

And it's not only the patient who worries, of course. It can affect the whole family. Sylvan Rainwater, Pam Hiebert's partner, reflected on the role that testing played in their lives since Pam's diagnosis at Stage IV, three years earlier, and the ways in which both of them had changed in attitude over time:

Pam goes in for another bone scan today. She's had two more, one each year, since that first one. Each one she has faced differently. That first one was new and terrifying, in a time of crisis and facing the unknown. The second one she faced with anger, cursing the machine as she lay down. Last year she approached it with dread, having lived with health again and fearful of going back into medical crisis. This year she's getting the scan a few weeks earlier than the previous two years. She's had increasing body pain again, in spite of exercise and generally improving health in most ways.

After two weeks of the pain not clearing up, she made another appointment to get it checked on, and found that her tumor markers were up. The oncologist drew blood again and said that if they continued to rise she would need a bone scan. So here we are, with markers rising and body pain, facing another bone scan.

We've gotten used to relative health and well-being again. Pam's remission has been a gift that at first we didn't know how to accept, but have learned to be grateful for. We know now that her markers have risen before and fallen again for no apparent reason, and that body pain is something she has lived with for a long time, with flare-ups certainly not unheard of. We know this could all be nothing, a false alarm like other false alarms in the past.

When you live with metastasized breast cancer everything sounds an alarm. We also know that it could be the recurrence we've been told will most likely happen sometime (no one can say when) and we want to be timely and responsible about treatment options if that turns out to be needed. We've learned that you don't have to respond to a test result the same day. We've decided that when we get the results, no matter what they are, we will continue with our plans to go to the family reunion in Kansas and defer decisions about treatment until after that. There's a measure of calm acceptance that wasn't there before, just because we know so more now than we did then.

I find that I fear losing that calm acceptance and being thrown back into medical crisis. That was such a horrifying time. I tell myself that we've changed and grown and learned and that the experience will be different, which is certainly true, but still…the what-ifs lie in wait, trying to shred my self-control, threatening my ability to concentrate on my work once again. I breathe deeply, trying to meditate, and find the monkey mind jumping crazily from one thing to another. I re-center again and again.

As Pam and I talk about our anxieties, we recognize that this test is only a procedure, which will give us another piece of information. It will not give us The Answer, but it does have the power to lead to procedures that will alter our lives. For me, the fear and lack of control is centered in the fact that it is not even my own body, but that of my beloved. For her, similar feelings surround the fact that it is her own body. For neither of us is it easy.

Every woman with metastatic breast cancer becomes expert in the anxious art of waiting. Two years after high-dose chemotherapy for inflammatory breast cancer, Bonnie Gelbwasser tells her own experience.

I have not found an easy way to cope with the waiting, whether it is for test results or waiting until you can have the test (sometimes tests or procedures are scheduled days or weeks in advance). I try to maintain my normal daily routine--I get to work and get involved in that, or stay as busy as possible on weekends. I do not eat well during these times, have trouble sleeping and am often distracted and edgy. Fear and anxiety appear to have taken up permanent residence in my psyche. I admire and envy anyone who can stay relaxed and focused in the face of a disease that seems to always be threatening to return.
Still, Bonnie is actually one of the lucky ones, whose providers, sensitive to the stress she is under, arrange for her to get tested and obtain results in a timely way.

To my great relief and comfort, my doctors have consistently given me results as quickly as possible. Three examples: I have had three bone scans so far. Each time, the M.D. who reads these scans has come to me before I left the room to tell me that everything looked okay (twice) and to reassure me that although it was possible that a more thorough examination of the results might indicate a problem, it was unlikely. The last time, when a shadow did show up, he walked with me to the Hematology/Oncology Clinic and he then met with my oncologist, who talked to me shortly thereafter.

I had a biopsy that was totally unexpected--the oncologist found something she wanted biopsied immediately and sent me to the surgeon. My next appointment that morning happened to be with my therapist. My surgeon arranged to get the report very quickly and to interrupt (with my permission) my session with the therapist (less than one hour later) to tell me the results were benign. Had the cells been malignant, I would have been with the therapist when I got the news.

I had a lumpectomy on a Tuesday and was told not to expect the results before the following Monday. The surgeon's nurse said she'd call me if they came in earlier. That Friday I received a call from the surgeon himself, who said his nurse was not in the office that day and the pathology report indicated no cancer and he didn't want me to have to worry over the weekend.

To top it off, about half an hour later, the nurse called. She said she'd called the lab, gotten the results and wanted to let me know. I had a similar experience after my mastectomy, when the nurse called me late on Friday afternoon to tell me that she'd just learned that my lymph nodes were clear and thought I might like to celebrate over the weekend.

Many women are less fortunate, and the anxiety often becomes even worse when test results are not forthcoming. Pat Leach reported frequent frustration in obtaining this information:

I'm usually a basket case waiting for test results. And many times the docs keep me waiting. I bug them with calls, etc., but it doesn't always work. Then I usually take the "no news is good news" attitude and go on with my life. It works some, and as long as I feel reasonably well and can keep occupied I do okay.

I agree that frequent testing means increased nervousness and anxiety. I'm not sure what the answer is. Even if I have a "test break," I'm anxious over what might be going on. Receiving good news--and that can be anything from tumors are gone or decreased in size to tumor size is stable and especially, no new spots seen--is about the only thing that calms me down for awhile….

Barb Pender has discovered a strategy that works for her:
My health care providers have been very sensitive to my needs--emotionally and physically. My doctors have been very sensitive as well. With every scan, I remind my doctor's case manager, "Don't forget, Sarah, I'm waiting on pins and needles. The weekend is coming and I would like to know something." If the official results are not in, my doctor calls the radiologist and gets some sort of a preliminary idea of what is going on. So, I think expressing your needs is the most important suggestion I would give to someone battling the waiting game.

While many of the tests used in following breast cancer patients are not in themselves physically painful, there are a few that are. PJ Hagler, who has endured many of these tests, speaks as a veteran:

I will admit that over the past six years especially I have had every test known to man and then some. I have an oncologist who believes in being 100 percent sure of what he is dealing with and doesn't want to second guess why I feel the way I do. He wants to be sure of chemo and also he knows because of the expense of the Taxol, that the insurance company would not agree to treatment unless he could justify the need. He will fight any insurance agency for full payment if he has to fight endlessly.

The worst time was the beginning in 1990-1991 when he was trying to find the mets to the lung. He was so sure there was cancer and he couldn't see it anywhere. It finally took opening my back and looking at my lung to be sure. I prayed very hard for the strength to endure the pain. The hardest tests, while they helped slightly, were not worth the pain in my case. I had a bronchoscopy, two thoracenteses and two liver biopsies. All but the last biopsy came back inconclusive.

Reading the harrowing description of one of PJ's liver biopsies, Pat Leach, a nurse herself, became angry.

I think all of them should have to undergo these tests just to feel physically what it's like, especially the painful ones such as bone marrow biopsies and liver biopsies. I always ask for sedation and if the doc says no--I take my own. Ativan is a wonderful drug to keep around. A couple work wonders on my anxiety, pain level tolerance, etc. And I wish I could let every woman know that sedation can be given for these biopsies. Duke did it and I tolerated the procedures much better than those done here in Connecticut where the doc said, "No sedation, I need you to be alert." Bullshit--I get so mad that they make us suffer--PJ should not have had to endure what she did. I try to be as honest now as possible with my docs and am at the point where if they won't do it the way I want it done, I'll refuse.

Whether you tolerate the waiting with equanimity or insomnia, whether you endure painful tests stoically or insist on pharmaceutical help, it helps to know that you are far from alone in your tribulations. It makes sense to have a support person with you, if you find that comforting. And it makes sense to assert yourself to arrange to get your test results as soon as possible. For the woman with metastatic breast cancer, these routine events are anything but routine.

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