Getting a mastectomy to prevent breast cancer: Becky’s story
Becky's mum had breast cancer at a young age and, after researching her family's health history to assess her genetic risk, she took the difficult decision to have a preventative mastectomy. This is her story.
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 – surgery that prevents you becoming pregnant. Because of my mother’s early death from breast cancer, I believed I would die young, leave any children I might have had without a mum, and potentially 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 proactive approach to preventing breast cancer. I hadn’t liked feeling like a sitting duck just waiting for breast cancer to strike, so I consulted a genetics specialist to find out my risk of developing this type of cancer and possible preventive methods, such as having a mastectomy.
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.
I was in the minority of women who had the option to be proactive about 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. It made sense for me that getting a mastectomy might prevent breast cancer.
I was shocked to discover that all the women four generations back, except for one great, great aunt, had been diagnosed with breast cancer before the 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. Getting a mastectomy to prevent breast cancer seemed to be the only choice, 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, although today the nipples would be removed because they contain cells that can 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 but because of a cancellation, I only had to wait for one month.
I was surprised at how well I handled the whole hospital experience. From my personal and professional experience, I knew how important it was to not repress my grief. I had my husband’s full support behind my decision and he was very emotionally available, which helped a lot: 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 also made it possible to become parents. My husband and I adopted a beautiful six-month-old little girl from Korea.
A few years after my mastectomy, however, I started to experience exhaustion, muscle and joint pain, poor concentration, thinking and memory problems, headaches, and blurred vision with dry, painful eyes. Years earlier, I’d been hit in the chest while playing basketball and one of my reconstructed 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. I felt incredibly alone because I was not a breast cancer survivor and did not fit in a survivor’s group, but yet I was faced with having to figure out how to cope without breasts.
Now, at age 52 and in the throes of menopause, I am having hot flushes and sweats 30-40 times each day. Since hormone replacement can stimulate the growth of certain types of breast cancer tumours, hormone replacement therapy is not advisable for me.
I am trying to keep my fear in check, while desperately searching for answers on how to treat my menopausal symptoms without developing 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 in the United States, getting a mastectomy to prevent breast cancer 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 oestrogen following prophylactic breast surgery.
With today’s technology a tumour can be analysed to determine if it is hormone-sensitive. Despite my mastectomy, I still have some breast cells in which oestrogen 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, which is comforting as getting a mastectomy to prevent breast cancer was a move of empowerment too. With the support 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 Oestrogen Ratio (Oestrogen Metabolic Index, EMI; reference: Metametrix Clinical Lab.1-777-446-5483), which indicates how well your body fights hormone-sensitive tumours. 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 analyse 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 before I will consider it worth my time and money. Big decisions like this require deliberation.
The motto I have made for myself and try to live by is, “don’t run scared, walk smart.”
Becky Zuckweiler, MS, RN, CNS, is the author of Living in the Post-mastectomy Body: Learning to Live In and Love Your Body Again, published by Hartley & Marks, 1998.