My Story: A Front Row View of Changes in Breast Cancer Care
Since Dianne Cooper-Byram, PhD, was a young child, breast cancer has had a prominent role in her and her family’s lives. She’s had a front row view of how treatment of breast cancer and the culture around the disease has changed over the years. Here, Dianne tells her story.
My mother was diagnosed with breast cancer at age 27, in 1948, when I was 3 years old. I realized later that after her diagnosis she tried to live life to its fullest, due to her belief that she didn’t have as many minutes left as other women her age. Her energy was infectious. It became a lifestyle we all adopted. My dad took a much bigger role in parenting after her diagnosis. He became the director of the “fun time,” which lasted into my adolescence. We took lots of road trips and just enjoyed the new adventures. He said if we could drive there we could go there. As I think back, the nonverbal message was “live NOW.” He was the ultimate optimist. There would be no more talk about breast cancer or dying. Mom didn’t die, much of the fun settled down, and we became a regular family, except Mom went off to work (to prove she could) and Dad continued to do much of the parenting, which was not very common in the 1950s.
I grew up, went to college, got married and had children. When I was 24 years old, my sister was diagnosed with breast cancer. She was 27, just like my mom was, and had the same disfiguring radical mastectomy my mother did. You would think that they would have improved on the treatment of breast cancer in 20 years!
My mom and sister were silent warriors: There was no talk about the emotions they or my dad and brother-in-law felt. I made a decision that when I got breast cancer (I was told it was inevitable because of my family history) I would not be quiet.
I had my first mammogram at age 27. On a Friday in 1976, when I was 29, the surgeon, who I had been seeing every 6 months since my sister’s diagnosis, found “something” in my right breast. He immediately made arrangements for me to have it evaluated in the hospital the following Monday. I told the surgeon that if I did have cancer, I would not do a radical mastectomy because I did not want to be so disfigured. He agreed to my request.
Monday came, and off we went to the hospital. I was not very anxious: I figured it would all be fine. We checked in and saw the doctor, who was very reassuring and told me he would take good care of me — sounded good to me!
How surprised I was after the surgery when I was told that I had a malignant tumor and that they had removed my breast without first telling me the diagnosis. I decided then that I would do something to help other women, so they could have tumors evaluated without the rush.
I was in the hospital for 12 days (so different than the 1 or 2 days’ stay today). I wanted to feel bad and grieve for the breast I lost. Instead I went home. My boys, who were 3 and 4, were there waiting, the dog was barking and the results of my exam from the Marriage and Family Therapist licensing exam I had taken were there (hooray, I passed). No time for tears, or grieving. Later I found every time I wanted to throw a tantrum, or get depressed, or be scared, there was something sadder someone else was going through, so I did not take the much-needed time for myself. I attributed my resilience to my mom’s motto: “Don’t give in. Get up. Don’t let them see you sweat!”
My sister’s breast cancer returned in 1989. She died of metastatic disease in 1991, when she was 49 and I was 46. My mother and I were in shock. My mother never recovered from the loss of her daughter and the guilt that she had given her breast cancer. There was no consoling her, even though we knew very little about “breast cancer genes” at that time and there was nothing she did to cause it. Again, I made a decision to find out all I could about breast cancer and how it was passed from generation to generation. I did this quietly, as I did not want to make it my identity.
I found a plastic surgeon who would do reconstruction and reduce my existing breast. The reconstruction was a long, hard process. There was no such thing as expanders then: It took five surgeries. I would go on to have four different sets of breasts in my life.
After my first diagnosis I went on building my career as a psychotherapist, as well as being a mom and wife. Nobody talked about the shift in our life. Eventually my husband and I divorced. Breast cancer and fear of the unknown put a great deal of pressure on a young marriage.
I needed to find a job. I thought I would teach, but the school district said I would have to wait, as it was too soon after my breast cancer to hire me. That was in 1978 — things have changed since then. I got a job with the American Cancer Society, and my career took on the specialty I wasn’t sure I wanted.
I had a recurrence in 2000 and finally had a second mastectomy. I also had my ovaries removed, because, no surprise, I tested positive for a BRCA1 mutation. I went on a crusade to encourage the rest of the family to test. They had little interest at first, but now some members of the younger generation are in the process of getting tested. I now know how my mom felt.
Times have changed and advances in treatments, detection and information about breast cancer have grown. People live longer and talk more. With any medical advances, there are ups and downs. With genetic testing comes more decisions people have to make. I have worked with many women who were positive for a mutation in the BRCA1 or BRCA2 gene. They had the daunting task of making decisions about preventive measures. I support them in thinking not only about the quantity of life, but often about the quality of their lives. I truly believe the more we know, the better the decisions we can make. But what about our quality of life? Can the fear of the future ever be quieted? I hope we can take the energy we would put toward fear and turn it into courage to fight for the health of the next generations.
Dianne Cooper-Byram, PhD, is 72 years old and a licensed psychologist. She lives with her husband, Bob, and their dog, Dolly, in Oxnard, California. Dianne and Bob have six children, 15 grandchildren and one great-grandchild.