Breast Cancer
A Young Woman's Difficult Journey Through the Health Care System
Maggie Frederick
I was lying on the operating room table, strapped down in a "T" shape with an intravenous line in my outstretched left arm, with my right arm extended to expose my right breast for the biopsy My legs were strapped tightly together. A thermal blanket covered me from the waist down. I remember thinking "this is what Mom went through. This is the closest I'll ever be to her."
I was 12 when my mother died of breast cancer; she was barely 50. In early 1990, at age 36, 1 had a routine physical examination and asked my doctor about a baseline mammogram. Doctors had recommended for years that I should have one when I reached age 35 because I was "high risk" for breast cancer. My primary care doctor told me to call the breast cancer screening program, if the program would not admit me, I should call back for a referral. The screening program told me that I was "too young," that I had to be at least 40 years old. I called my doctor and made an appointment for May, two months away
Diagnosis
I wasn't particularly nervous about the mammogram. It was just one of those errands to check off my list of things to do. I was surprised but unconcerned when the Radiology Department called the next day to ask me to schedule a magnified mammogram. I had no symptoms other than occasional twinges of pain like electricity in my right breast, but I had read that breast tumors don't hurt. When I saw the film in the darkened room, the perfectly round black marble clearly defined in my right breast, I knew I had cancer. The radiologist talked about percentages and cysts, and recommended a biopsy, but he never told me directly that I might have cancer. There didn't seem to be much he could say beyond the comfort of statistics, the "remote" possibility of a cancer diagnosis.My life became linked with hospital schedules, radiologists, surgeons, anesthesiologists, and the results of the next test. Two weeks later, after checking into the outpatient surgery unit, I was wheeled down to the Radiology Department for a needle localization biopsy The radiologist inserted a needle into my breast and fed thin wire down to the suspect area to guide the surgeon. I was kept on the mammography device for more than two hours. After many films and additional injections of a local anesthetic, I was left alone for several minutes, with my breast still pressed under the plastic vise of the machine I looked down, curious about how this was done. My breast was swabbed and stained with iodine; a thick needle penetrated the skin of my upper breast. I was overwhelmed with sudden fear and loneliness. This pursuit of a diagnosis, the whole medical process, was out of my control. I desperately wanted off that machine. Finally, I was wheeled back to await my turn in the operating room.
Although I was fully conscious, I don't remember much of the biopsy surgery or anything of how I spent that Memorial Day weekend. On Tuesday, May 29, 1990, the surgeon called me at home. I was alone, sitting at the dining room table, when he told me I had cancer.
A few years after treatment, I obtained a copy of my medical records to learn specific details about my diagnosis and treatment that I had forgotten or could not absorb in the emotional turmoil that followed my diagnosis. I discovered that my tumor was 1.5 centimeters long, 5 centimeters deep. The pathology report was inconsistent about whether I had extensive intraductal carcinoma. All 14 lymph nodes were free of cancer. On How cytometry, the S-phase of my tumor was high at 12.5%, the ploidy index elevated at 1.86. Estrogen receptor status was negative. This meant that at least two indicators of cancer growth were not in my favor, and that I needed chemotherapy.
Coping
I returned to work two days after the biopsy and began the lifelong process of coping with a cancer diagnosis. No one is prepared for it, despite knowledge of risk factors and genetic markers, or professional training. I was single and living alone, with scant financial resources or family support. Six months earlier I had earned an M.PH. from the University of Washington School of Public Health and Community Medicine, and had barely begun my career. I knew something of the technical aspects of cancer, and had never shied away from using the word. it had been a part of my life since primary school, when my mother was first diagnosed; my father died of lung cancer when I was a college sophomore. My maternal grandmother had breast cancer. During college I wrote a long paper about cancer for a class on death in American culture. The disease had always been present, if only as a dim possibility or intellectual curiosity Now it was the cause of invasive and toxic treatments, and the deepest loneliness I had ever felt, and still feel at isolated moments.I tried to cope by intellectualizing my diagnosis -- it was another health topic to research and analyze. After reading several journal articles about breast cancer, I realized that few dealt with breast cancer in young women. I was frightened to realize the appalling lack of knowledge and the paucity of treatment options. Researchers could not tell me that I would survive. I stopped reading when I realized that, while research findings are important, P values and confidence intervals would not help me live. My experience could not be reduced to statistical equations. I was fully aware that there were no guarantees -- I could never be assured of a cure. Uncertainty was part of the package, but I could discover my own way to cope with the diagnosis and to survive.
Treatment
On June 13, 1990, I entered the hospital for a "lumpectomy," to be followed by seven weeks of radiation therapy, five days a week. Two weeks after surgery, my incision had healed enough for radiation to begin concurrently with chemotherapy I often felt out of place during treatment because I seemed to be the only young person in the waiting room.I hated chemotherapy. One of the, nurses admonished me to "think positive," to which I replied "OK, I'm positive I hate chemo." The first injections were the worst because I had absorbed all the portrayals of chemotherapy in movies. I went home and waited to be violently ill. I finally listened to a relaxation tape and drifted off to a deep, restful sleep.
I remained healthy during six months of chemo, although "healthy" acquired a new meaning. The drugs gradually sapped my energy and caused my hair to thin. My sense of smell became unpleasantly acute; the smell of gasoline or grilled meat would trigger nausea. I became pale, slightly anemic, and bloated. I vomited blood a few times. To stay warm, I slept in several layers of clothing, a yam hat and scarf; during the day, I wrapped myself in blankets and sipped cup after cup of herb tea. A month before cherno ended, I developed several painful blood clots in my right leg. I would lie awake at night with terrifying fantasies of death from a blood clot drifting to my brain or lungs.
I finished chemotherapy on December 21, 1990, during the harshest winter storm Seattle had experienced in years. The last injections seemed a mere formality, but were psychologically the most important.
The Stigma of a Cancer Diagnosis
I assumed that I would survive breast cancer but this assumption was not based on my physicians' prognosis, my tumor size, my estrogen receptor status, or our treatment decisions. Several factors in my diagnosis gave cause for concern, but I simply couldn't conceive of dying. My experience of cancer was another matter entirely: the fears, discomfort, and reactions of others were much more difficult to deal with than the disease itself. I only thought about death when my life seemed totally out of control, when I felt caught in a downward spiral and losing much of what I had worked so hard to accomplish.On my first day back at work after my lumpectomy my supervisor told me that she didn't want to pay sick leave out of project funds. She told me that "it would be better" if I left my job and expressed her concern that I may become ill and not be available for telephone calls - although my position had always been part time. Within three weeks of my diagnosis I had become persona non grata. Three months into chemotherapy, I was laid off, Although I investigated filing a discrimination complaint with the State Human Rights Commission, I soon realized that, if I were to do so, I would never work in public health again. In addition to continuing cancer treatment, I had to look for another job.
I refused to take disability compensation because I was fully capable of working. I had to swallow my pride to apply for food stamps. My brother lent me several hundred dollars. Although I was eligible to continue health insurance coverage through COBRA, $212 per week in unemployment compensation wasn't enough to pay the premiums. I applied for and narrowly met the income restrictions for unsponsored care coverage and was granted coverage for six months. My landlord was generous in his support as well. For several months, I either couldn't pay rent or made small partial payments. It took a year to begin repayment, and another year to pay the entire debt. At times I felt like a beggar, and that I could never repay these generous, kind-hearted people.
Sometimes I struggled to teach others that I did not want my life to be totally consumed by cancer, that I didn't want every thought, conversation, or outing to be wrapped in concerns for my health. I wanted to be as "normal" as possible, even though the major events in my life were defined in large part by a disease. I didn't want to be that disease.
My constant fear was a loss of control -- to the medical process, in which I sometimes felt that decisions were being made without me -- and to the stigma of cancer that still exists even among well-educated, well-meaning people. I feared the way some people revised their impression of me: I was diseased, somehow impure and uncomfortable to be around. One woman told me that she believed I had cancer because I had a problem with my sexuality. I received books espousing the theory that cancer is caused by personality deficits, such as repressed anger. One male acquaintance told me that I should "embrace" the disease as a part of my life -- as if I should rejoice at the news of a life-threatening disease. For some people, I will never be anything other than cancer -- I seem to have lost my identity as a person. I tell myself that they mean well.
Psychotherapy helped with my periodic depression, which I feared more than illness or death from cancer. I was afraid that if I became seriously depressed, I would never recover, never regain control of my life. I was afraid of losing those few moments of hope that still came, despite the difficulties. Financial difficulties brought an end to therapy, as my therapist could not afford to carry my unpaid bills any longer. At times, I didn't have the will or energy to get out of bed in the morning - I had no job, no real purpose in life other than cancer treatment. My friends, with their own families and concerns, were at work or graduate school all day Therapy and a cancer support group kept me alive when I wanted to give up, when I couldn't tell my friends how badly I felt. Friends told me how much they admired me, how strong I was. They were generous in their support and care, but I felt vulnerable, alone, isolated from normal life.
After a year of patching together three part-time jobs, I was hired full-time in a management position for an AIDS/HIV epidemiologic study I regained my health and my hair within a few months, but it took another two years for me to forget the anniversary dates of diagnosis and components of the treatment, to move on as a survivor.
Recommendations
As a cancer survivor, I have several recommendations for breast cancer diagnosis, service delivery, and support for women.Screening and Service Delivery
1. Breast Self-Examination: Although I was at high risk for breast cancer, no health care provider ever taught me breast self-exam (BSE) or asked if I knew how or if I wanted to learn. If a young woman learns BSE early in her life, and is coached to perform it regularly, she may integrate it into her life as a healthy routine. An important component of BSE instruction, for all women, is to inquire about and acknowledge any fears or misconceptions about breast cancer. if a woman is afraid of finding a lump, so afraid that she does not perform BSE regularly, if at all, she may risk her life.
2. Mammograms: Recommendations for the age when women should begin to get mammograms, even for high-risk women, are inconsistent. Women are exposed to a myriad of conflicting messages from health care providers, community-based organizations, the news media, cancer researchers, and, of course, insurance companies. This lack of consensus could be costing lives. inevitably, this uncertainty can lead to delays, missed appointments, and avoidance of life-saving screening procedures. Mammography should be accessible to all women.
The director of the breast cancer screening program where I was diagnosed told me that if I had been his patient, he would not have referred me for a mammogram, because "only 7% of breast cancer is in young women." He said that screening in younger women was not "cost-effective." I believe that my diagnosis of cancer was the blind luck of having chosen a primary care physician who was willing to refer me for a mammogram, and my own persistence in following through with her advice. Even today, it scares me to think of "what if...". I do not believe that any woman should be discouraged if she inquires about or seeks referral for a mammogram. Her interest presents an opportunity to discuss her concerns, risk factors, and provide educational interventions, at the very least.
3. Treat the mammography experience seriously: Decrease waiting times for appointments, and create a positive environment, I overheard technicians boasting about how many women they could get through in an hour, as if they were on a factory production line. When I checked in for a mammogram one year after completing treatment, the receptionist in the Radiology Department told me that the clinic implemented Saturday hours because of "all those women who see the news and get all worried about cancer." No woman, especially a former breast cancer patient, should tolerate such ignorant remarks, or be labeled a hysterical female for taking care of her own health. If breast cancer screening programs are to be effective, they must meet and respect women's needs.
4. Treat the person as well as the disease: Health care providers and others should avoid the tendency to pressure breast cancer patients to "think positive." I was a fairly well-informed, assertive patient, but early on it was clear that I had to be my own advocate, to make my needs known. I struggled with job loss, limited finances and increasing debt, feelings of isolation and depression. These were not "positive" experiences, and I wouldn't allow anyone to tell me otherwise. My oncologist, although technically proficient, was unresponsive and uncomfortable when I told him about the events that followed my cancer diagnosis and how difficult it all was. While it is important to offer hope, it is not helpful to deny the seriousness of cancer's effect on a woman's life.
Support Issues
1. Attitudes of Health Professionals: My experience showed that health care providers and public health professionals are not immune to archaic notions of cancer. In their discomfort, some may reinforce the cultural stigma associated with the disease, with painful consequences for the cancer patient. Some, like me, suffer compound losses, but at the time of my diagnosis I was able to advocate for my needs and find resources to survive. Many women are less fortunate; they lack health insurance and have difficulty obtaining treatment and other needed support. I wish it were not necessary to state that persons diagnosed with cancer, or any other potentially life-threatening condition, need compassion and sometimes help with basic needs. I am not confident that I would survive a recurrence of breast cancer. The absence of compassion and care for others in need, so evident in our culture, and the continuing stigma of cancer, may be more than I would be able to confront and survive.2. Focus on Survival: Women have been deluged by reports that screening mammography in women 40-50 years of age does not reduce mortality. Although statistically true for the groups of women studied, the message that needs to be emphasized is that many thousands of women survive breast cancer every year. While there are no guarantees -- I hesitate even now to consider myself "cured" -- women can gain many years of productive life, and perhaps improved quality of life, through early detection and treatment. Mortality is not the only outcome.
3. Peer Educators: Incorporate breast cancer survivors as peer educators into the health care system. We are the most powerful message of all for helping women to deal with their fears surrounding mammography, a cancer diagnosis, treatment, and recovery Screening programs and community or clinic educational campaigns offer ideal opportunities to include a survivors' panel. We also have a place in ensuring that breast cancer treatment regimens, support services, and information are responsive to women's needs. I am not aware of any studies that have evaluated whether women with breast cancer had access to or received support services they needed, or that documented their experiences confronting the health care system.
4. Continuing Issues: For breast cancer survivors, completion of treatment and recovery of health does not necessarily mean that cancer is no longer an issue. At 43, 1 am faced with the enormous sense of loss that cancer has brought to my life. I grieve for my mother, whose early death was the most important event in my childhood and which still shapes me as an adult. Now that I face menopause, perhaps as a result of chemotherapy, I feel a deep loss that I will never be able to have children. The treatment consent forms do not prepare women for the residue that clings following treatment, the later emotional response to side effects, some of which may be permanent. I am now at higher risk for ovarian and colon cancer, in addition to the lifelong possibility of a breast cancer recurrence and increased risk of new cancer in my other breast as a result of radiation. Completion of treatment in itself does not help a woman put her life back together, recover her sense of identity beyond the persona of a "cancer patient," or confront the future with confidence and renewed health. She still may need services and support.
Breast cancer diagnosis and treatment may have long-term consequences. It may change a woman's perception of health and illness, her self-esteem, and body image; affect her reproductive capabilities and sexuality; and cause early menopause. A return to clinical wellness is not the end of the story. Survival lasts a lifetime, with its own promise and pain for what has been given and lost.
Recommended Reading
Charnbliss L: The cancer reality gap. Working Woman, October 1996, pp 46-49, 68.
Duff K: The Alchemy of Illness. New York: Pantheon Books,1993.
Lorde A: The Cancer Journals. San Francisco: Aunt Lute Books, 1980.
Middlebrook C: Seeing the Crab: A Memoir of Dying Before I Do. New York: Basic Books, 1996.
Sontag S: Illness as Metaphor. New York: Farrar, Strauss and Giroux, 1988.
Author
Maggie Frederick, M.A., M. P. H., is review coordinator in the Human Research Review Section of the Washington State Department of Social and Health Services and a member of the DSHS/DOH Human Research Review Board. She is writing a book about her experience with breast cancer.
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Created: 5/7/98 Updated: 7/14/99
