Sometimes neither patient nor physician is vigilant enough.
I felt like I had been hit by a truck and my world was falling apart
The docs gave us little information about recurrence, odds, what to expect. Most of what we knew was what we--mostly me--read.
Maddening as this may be, the variability and unpredictability of metastatic
breast cancer is also a source of hope.
Signs and Symptoms of Recurrence
The following article is excerpted from Chapter 2 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.
There are clearly certain physical symptoms that do warrant investigation. Dr. Susan Love notes that while patients fear any new change in their bodies after a diagnosis of breast cancer, "if you know that the symptoms of breast cancer metastasis are usually bone pain, shortness of breath, lack of appetite and weight loss, and neurological symptoms like pain or weakness or headaches, there are at least limits to your fear." 1
Other symptoms to look out for are persistent abdominal pain and a cough that won't go away. Any change in your mastectomy scar, a lump or a rash where the incision is should be reported to your oncologist. If you've had a lumpectomy, examine the treated breast just as you do your other breast, for lumps and thickenings and changes in the skin or scar.2
If you find yourself concerned about every new ache and pain, you may sometimes envy your more oblivious friends who seem able to avoid the constant fear of recurrence. But being oblivious can be problematic too, when it extends to denying or overlooking symptoms. Sometimes neither patient nor physician is vigilant enough.
Free of cancer for six years, but plagued with long-term pain in her hip and chest, Lisann Charland felt betrayed when her doctor missed the early signs of recurrence. A computer systems analyst who lives in Mountain View, California with her husband Leo, Lisann admits that
I did not know that breast cancer could spread to other parts of the body. I did not even know the word "metastasize" until that time. I felt angry at all the visits and tests I had done, and yet he could not find anything wrong with me sooner. I felt like I had been hit by a truck and my world was falling apart before me.
Four years after that, when she got the telephone call that confirmed a recurrence to her liver, Lisann decided to contain her fears until she could meet with her doctor, so as not to unduly worry her husband.
I got out of bed and paced the house, looking for any types of books that would tell me what the liver functions were. I went in and out of the garage opening boxes and could not find anything. My husband was fast asleep while all this was going on. I had a sleepless night. I cried and felt so helpless as the night dragged into morning. Where did I go wrong? Why was this happening to me again? What had I done to deserve this?
Barbara Ragland, now retired on medical disability from her job at the University of Nevada, was 63 years old when her breast cancer, first diagnosed in 1974, returned in the form of two small bumps at the site of her original radical mastectomy.
The surgeon performed the biopsies in his office under a local anesthetic so we were talking all the time. When he had excised the one and transected the other, I asked him if they looked like cancer. He said, "That's what we have the pathologist for." I said, "I know. However, we've known each other for almost twenty years, and I want to know what you think." He said it looked like cancer. My first reaction was disbelief. I knew if I made it to the five-year mark after the first cancer, my chances were good; and then when I had made the ten-year mark, I thought it was gone forever.
Bob Crisp, a professor of computer systems engineering at the University of Arkansas, researched his wife Ginger's illness thoroughly when she was first diagnosed in 1993.
We always knew the risk was there. I probably understood it better than Ginger as I did all the reading. I knew her cancer was aggressive so I guessed that if a recurrence would happen, it would probably show within two years. At the end of one year, I started to breathe a bit easier. I was not necessarily expecting it nor was I thinking we were in the clear. Ginger had resumed all of her activities and life had returned to normal. The docs gave us little information about recurrence, odds, what to expect
. Most of what we knew was what we--mostly me--read.
It is not uncommon, among the typically avid information seekers on the Breast Cancer List on the Internet, for patients or their spouses to become quite expert on particular aspects of the disease and its treatments. This depth of knowledge can work both for and against you. At times, having access to the latest information can relieve anxiety and confirm treatment choices. Combined with assertive behavior, such information can and does break down the increasingly formidable barriers to getting the best medical care and adequate insurance coverage.
At other times, however, knowing too much can actually decrease your confidence in a particular treatment or physician, when it becomes apparent just how much is still uncertain and unknown about the disease. It can lead to the sort of hypervigilance that Ellen Scheiner, as an internist specializing in the treatment of cancer patients, experienced as she evaluated her condition and the treatment she was receiving while undergoing intensive chemotherapy:
During the last hospitalization my gums were bleeding and I did not dare to ask my platelet count. I fantasized bleeding into my brain--one of the disadvantages of knowing too much.
Even for lay people, reading or hearing that metastatic breast cancer is still rarely considered curable can eat away at any remaining hopes, despite the wide variability of the illness and the fact that metastatic breast cancer is best managed as a chronic, treatable disease. Social worker Rosalind Kleban observes this problem in the women she counsels all the time.
Most of the women I work with are research oriented and go immediately to the literature. Although they are extremely bright and intellectual, and under any other circumstances could understand the real meaning of variability in statistics, given the emotional state they are in, they just can't. They see everything as grim and black.
Others, depending on their emotional makeup, may see information like this as a challenge, and become determined to live long enough for the new treatments they are convinced will come. Still others pursue with renewed vigor a process of fashioning new kinds of hope and meaning from the time remaining to them.
Some physicians are very clear about risks with their patients. Kim Banks was only 34 years of age at her first recurrence. A freelance writer, Kim lives with her husband, Richard, in Colorado.
My husband and I had just celebrated our one year anniversary when I was diagnosed with breast cancer, and we hoped to start a family. When I had made it to the two year mark with no signs of recurrence, I had started to allow myself to think about having a child again. My first doctor was very adamant about my waiting on children. He also emphasized that the diagnostic tests on the original tumor showed an aggressive cancer and then there were the four positive nodes that showed it had started to spread through my lymph system.
After her treatment was completed, Kim's hope for motherhood began to flower again, though her doctors had warned her she might experience a recurrence.
I felt I had followed what my doctor told me and that the cancer was behind me. Before the recurrence I was the epitome of the eternal optimist, so even though I feared recurrence, I was still shocked that it had happened to me. My doctors and their staff were never overly pessimistic, which helped me to keep an optimistic attitude and go about life without constantly worrying about a recurrence.
Sometimes no one has a clear idea of what is going on, at least initially. "I had not been well for a long time," says Lucie Bergmann-Shuster, 51, who lives with her husband, Cy, in Northern California. Twelve years after her initial diagnosis, Lucie had been experiencing vague but persistent abdominal discomfort and tiredness for many months. Finally, she became concerned about her family history after reading a paper on the Internet about the risks of ovarian cancer for pre-menopausal breast cancer patients ten years after diagnosis. She asked her doctor to arrange for a transvaginal ultrasound and pushed for the definitive surgery which revealed metastatic spread to her ovaries and surrounding tissues and nodes. "Seems to me that getting the bad news was more of a relief after nearly a year of anguish," Lucie said later.
Breast cancer in all its manifestations is an unpredictable disease
"We can't accurately predict the course of any individual's illness," writes Dr. Susan Love, whose book is considered by many to be the breast cancer bible. "This is true of initial disease, and metastatic disease is even more unpredictable."3
Maddening as this may be, the variability and unpredictability of metastatic breast cancer is also a source of hope. Uncertainty--the perceived enemy of the primary breast cancer patient--can become a friend of sorts when you have metastatic breast cancer. Story after story of women far outliving expectations, of new treatments proving effective, of unexplained remissions, have led the group of survivors interviewed to look at statistics and predictions with skepticism, and dismiss the "deadlines" they may receive from pessimistic and occasionally insensitive physicians.
"That is the philosophy in my group: this is it, how can we live with this?" social worker Roz Kleban says. "This group is not a preparation for death, not that we can't talk about that. But the big chore here is, `How can we live with this?' All the reading in the world is not going to give you certainty. The chore is, `How do we live with uncertainty.' That's the goal here."
- Love, Susan, Dr. Susan Love's Breast Book, Second Edition, with Karen Lindsey (Reading, MA: Addison-Wesley, 1995), p. 476.
- Hirshaut, Yashar, and Pressman, Peter, Breast Cancer: The Complete Guide (New York: Bantam, 1992), p. 219.
- Love, Susan, Op. Cit., p. 475.