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In the years following World War II, women diagnosed with breast cancer had few treatment choices, no special counseling or support, and no inkling that certain breast cancers might run in the family. It was in this setting that Dr. Janet Reibstein's story of breast cancer began with the diagnosis, and eventual death of her mother's sister, Fannie. In the decades that followed, another aunt, and Reibstein's own mother, were diagnosed with breast cancer, and eventually died from the disease. Much had changed by the mid 90s, when Reibstein, by then a clinical psychologist in the UK, found herself making a difficult decision to beat the odds of breast cancer by having her breasts removed. In her recent book, Staying Alive, Reibstein explores some of the profound developments in breast cancer treatment and care by telling her own family story. Below, she discusses some of the trials she faced in making a decision to undergo preventive bilateral mastectomy, and insights gained upon her recovery.
What is Staying Alive about?
The book explores the meaning of breast cancer by looking at my family's experience with the disease, and how the family was actually shaped by the disease. It's also about the changes in breast cancer treatment and care, and how women are taking control of the disease in ways they could not have fifty years ago.
Could you briefly describe your family's history with breast cancer?
My mother and both her sisters had breast cancer. My aunt was the first in the family to be diagnosed, at age 29, when I was a child. Every ten years after that, a woman in my family was diagnosed and/or died from breast cancer. We didn't know what it was at first; it haunted us. We thought we were the victims of some grim joke. I preempted dying of cancer myself by having a preventive mastectomy, or both my breasts removed.
I didn't tell many people that I went in for the surgery. And one of the reasons is that so many people felt it was a repellent thing to do. I was really stunned by some reactions to the theory of doing prophylactic (preventive) mastectomies. And I thought, "Where do I begin to explain? How can I tell them that this makes perfect sense to me?" In a way, the book was an attempt to relate what it's like to live with an impending sense of loss and gloom, and how I came to make an aggressive decision in order to get away from the specter of this disease.
When did you first consider getting the bilateral mastectomies, and how did you approach this decision?
The first time a doctor suggested I think about the surgery, I was shocked. I knew that I wanted to breast-feed my children before I considered the option in earnest. And I did.
When my cousin called to tell me she had been diagnosed with breast cancer, I had already had my children, and had arrived to middle age. At that point, I really forced myself to seriously consider the preventive surgery. This led to hard questions about my breasts and what they were for.
First there was sexual ecstasy. That was a big deal to me. And I thought, "Is it possible to have great sex without your breasts being stimulated?" And I knew in theory it was, but that it might take some time. The other big consideration was cosmetic. I made myself think about my breasts in a different way. I trained myself to think of them as objects. After I'd done this, I knew I could go through with it.
Was this objectification a necessary step for you in preparing for surgery?
Yes. I felt lucky that I could do that. There are some women who couldn't. And I think it's much more traumatic for them, because they have to do the mourning afterwards.
How did the surgery affect your marriage?
When my mother had breast surgery, she told me she thought my father was disgusted by her. I don't think there was any indication he was, and it was a source of incredible tension between them. She simply couldn't believe him. But I understand now. How could her husband love her body if she had such contempt for it? I think that was a very big part of what came between my husband and me. I wanted him to do the thing that I couldn't. I wanted him to say my new body was perfectly lovable even though he knew that I didn't love it. So he kept saying, "I can't do for you what you can't do." It took a long time to come to terms with this.
In your book, you describe a day when you became disconsolate, after your doctor and his staff forgot you in a waiting room and lost your medical records. What did you realize that day?
I think I learned that no one else is concerned about your existence and your body and its welfare as much as you are. Your doctor looks after you as a doctor. You have to be the one who looks after your fate. You have to take an active role in your own care.
I think there must be a strong inclination to turn a doctor into the surrogate parent in moments like those.
Absolutely. You want to believe that someone will look after you; it's just too big for you to carry. "They will do it, that's their job." It isn't their job; it's your job.
What are some suggestions you might have for women preparing for breast surgery?
First, get informed. What are the statistical chances of success for the surgery? What are the risks? If you have to get chemotherapy, learn about the side effects. Think about what it will feel like and look like after the surgery. That was one of my biggest worries. What was it going to be like afterwards? And no one gave me answers to that. I had to travel to America and interview two women who had had similar surgery. They showed me what it was going to look like and talked about what it was going to feel like. They answered my questions about sex, and aesthetic things like which clothes to wear. So that kind of research can help get women prepared for the aftermath. And now there are lots of support groups and individuals who are willing to be resources for women who are looking for information.
What might you say to a woman first who has recently been diagnosed?
A breast cancer diagnosis can make you feel disempowered. So talk with people, and get information about the disease. This can give you a sense of control over something that feels totally frightening and devastating. It can help you feel oriented. It will help you find yourself on the map of breast cancer.
There are also ways you can care for your quality of life as you go through this. I had a friend who had a mastectomy at a different hospital the same time as I was having reconstruction surgery. She was having her nails done and having massages-and the whole experience was made much less traumatic for her. Afterwards, she integrated that into her life, so that the quality of her life became different. And I think those are now wonderful new steps that women can take for themselves.
But when you're first diagnosed, it's shocking. You have to expect you're not going to act right away. You have to recover. You have to be kind to yourself. And if you have surgery, there is a real bodily recovery period that you must go through. Be patient. I think that if you have the attitude that you can take some control, and be open to new information and support from others, and new ways of living, then I think you can really maintain a good quality of life.
Are you free of cancer now?
I have 1% of my breast material remaining. I could become cancerous, but it's very unlikely. But yes, I do feel I am free of breast cancer.
Were you surprised by how strong a presence breast cancer had played in the first part of your life?
Yes. I still have this struggle. You sort of map yourself onto what you know. So my mother died at 64 and was ill all through her 50s, so what's it like to have a life beyond 50, really? I am beyond 50 and I find it strange.
I find myself doing these amazing things. I talk about retirement with my husband. I think and talk about having grandchildren. I didn't realize before that I never, ever allowed myself to do that.
Janet Reibstein is a clinical psychologist and professor at the University of Exeter in the UK. Her book is Staying Alive: A Family Memoir, published by Bloomsbury in 2002.
