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By Becky Zuckweiler, MS, RN, CNS
I have been a psychiatric nurse for 31 years and a psychotherapist for 22 years. I suppose losing my grandmother to breast cancer when I was age 11 and my mother to breast cancer when I was age 13 sealed the deal on my career as a psychiatric nurse.
Breast cancer has played a huge role in shaping my life. In my mid twenties, I made an emotionally driven decision to have a tubal ligation. I believed I would die young from breast cancer, leave young children without a mom, and pass on the dreadful illness to a daughter. A few years later, psychotherapy helped me do delayed grieving over the loss of my mother and I became more rational and empowered to take a pro-active approach to preventing breast cancer. I hadnâ€™t liked feeling like a sitting duck just waiting for breast cancer to strike, so I consulted a genetics specialist at the University of Minnesota to find out my risk of developing breast cancer. Just after completing a very reflective six months of psychotherapy, I spent the next three months being guided through the process of completing a family medical history, which entailed requesting my motherâ€™s and grandmotherâ€™s medical records and gathering information from extended relatives. I was in the minority of women who had the option to be pro-active about breast cancer prevention, because 70% of women who get breast cancer have no known relative who has had breast cancer to alert them to their own risk.
I remember that the geneticist was a very kind, older man, who took my breast cancer concern seriously, instead of treating me like an â€śover-reacting, nut-case.â€ť I was shocked to discover that all the women four generations back, except for one great, great aunt, had gotten breast cancer before menopause. At the time (1981), my fibrous cysts were considered a risk factor for breast cancer. With that information, I was told I had at least a 60% chance of getting breast cancer. There seemed to be no other choice but to have my breasts removed, so I told the surgeon to remove my breast tissue, skin, and nipples. My breasts had now become a very scary, symbol of death. He thought I would be protected well enough by just removing the breast tissue (today the nipples would be removed because they know that the numerous breast cells in the nipples are too great of a risk to become cancerous). At age 30, I had a simple prophylactic bilateral mastectomy and reconstruction with silicone implants. I was terrified of having the surgery and was experiencing a deep sense of grief over the future loss of my breasts. The next available opening for surgery was in two months, which felt like an eternity. I spent hours sobbing and imagining I would become a screaming lunatic in the hospital. Because of a cancellation, I only had to wait for one month. I was surprised at how well I handled the whole hospital experience. I guess I had done so much processing of my feelings before hand that when it came time for the surgery, I was emotionally ready. From my personal and professional experience, I knew how important it was to not repress my grief. I had my husbandâ€™s full support behind my decision and he was very emotionally available. I drew from his strength and love. As we grieved together, we also took the attitude that we had just gained a new lease on life. I could now imagine a life beyond age 42, so I started a retirement account. Giving up my breasts made it possible to become parents. My husband and I adopted a six month old, beautiful, little girl from Korea.
A few years after my surgery, I started to experience exhaustion, muscle and joint pain, poor concentration, thinking and memory problems, headaches, and blurred vision with dry, painful eyes. When I was 42 years old, I was hit in the chest while playing basketball and one of my breasts changed shape and decreased in size because my silicone implants had ruptured. All my symptoms became much worse and I felt like I was dying, so naturally I was terrified and very depressed. I ended up having my implants removed and have used external breast forms ever since. Ironically, this was the same age my mother was when she died, and my daughter was 13 years old. I felt incredibly alone because I was not a breast cancer survivor and did not fit in a survivorâ€™s group, but yet, I was faced with having to figure out how to cope without breasts. I was also struggling with a scary, confusing, chronic illness (fibromyalgia) which most doctors didnâ€™t believe existed. What came to me was, â€śyou canâ€™t fool mother nature.â€ť Although it didnâ€™t fit with my concept of God and spirituality, I wondered if it was my karma to have the experience of breast cancer, so by golly, I was going to lose my breasts, get very ill, be fear ridden and then die, just like my mother did. My health has continued to be a battle, but I feel blessed that I only have to worry about getting breast cancer for the first time, instead of having to fear a recurrence. Maybe I am kidding myself, but I believe â€śsurvivorsâ€ť have a greater emotional load to carry than someone like myself.
Now, at age 52 and in the throws of menopause, I am having hot flashes and sweats 30-40 times each day. Since hormone replacement can stimulate the growth of certain types of breast cancer tumors, hormone replacement therapy is not advisable for me. I am trying to keep my fear in-check, while I am desperately searching for answers on how to treat my menopausal symptoms, without developing breast cancer. Genetic testing was not available when I had my bilateral mastectomy and I am aware that the current tests (BRCA1 and BRCA2) are very expensive and can often show false positives. According to research done at the Mayo Clinic in Rochester MN, my preventive surgery has reduced my breast cancer risk by 90%. The current research does not provide answers to all of my questions such as the impact of using natural or synthetic forms of estrogen following prophylactic breast surgery. With todayâ€™s technology a tumor can be analyzed to determine if it is hormone-sensitive (estrogen and progesterone donâ€™t cause breast cancer, but they will stimulate the growth of a hormone-sensitive tumor). Even though my breasts have been removed, I still have some breast cells in which estrogen could stimulate cancer growth.
I have found that I feel more empowered and in control (probably just an illusion, but we have to cope somehow) by adding some natural medicine to my overall health care. With the support and encouragement of my primary care physician, I also go to an internist who practices natural medicine. He has done a urine test called the 2/16 OH Estrogen Ratio (Estrogen Metabolic Index, EMI; reference: Metametrix Clinical Lab.1-777-446-5483), which indicates how well your body fights hormone-sensitive tumors. My ratio was very low. I am using specific foods and supplements to increase my EMI. My doctor and I will be discussing other genetic testing that will analyze for single nucleotide polymorphisms (reference: Christopher Foley, M.D. at www.minnesotanaturalmedicine.com). Although the cost for this type of genetic testing is minimal compared to the BRCA tests, he will need to convince me that the test can lead to treatment options instead of just satisfying my curiosity before I will consider it worth my time and money.The motto I have made for myself and try to live by is, â€śdonâ€™t run scared, walk smart.â€ť
Becky Zuckweiler, MS, RN, CNS, is the author of Living in the Postmastectomy Body: Learning to Live In and Love Your Body Again, published by Hartley & Marks, 1998.