Interview with Susan Conley, Author and Breast Cancer Survivor
January 10, 2012
Susan Conley is the author of The Foremost Good Fortune, and cofounder of The Telling Room, a nonprofit creative writing center for students aged six to eighteen. Susan is the keynote speaker at the Canary Foundation, Early Detection Luncheon Series on February 7, 2011, a launch event for a new Breast Cancer Early Detection Program at Canary Foundation.
Q: When and how did you discovered your breast cancer?
Susan: I’m a breast cancer patient who was told by my wonderful surgeon that I was a poster child for early detection. At first, I didn’t understand what she meant, when a lot of women are going through their early, startled days of diagnosis, they’re told: “there’s actually a silver lining here… you’re so lucky”. That word “luck” kept coming up, and I couldn’t understand why this story of cancer could have luck play a role in it. Eventually, I realized the doctors were referring to the fact that I found my cancer on my own, and it was very small, so we caught it very early.
After I discovered the cancer, I had a week of magical thinking where I envisioned it going away, but I knew in my heart of hearts that something was askew. I waited a week and then I went in to the hospital in Beijing, trying to be cavalier about it. The pinnacle of my stress and fear of the cancer occurred in a radiology ultrasound room. The Chinese surgeon and radiologist kept telling me that my cysts were “nothing, nothing, nothing,” and they tried to persuade me of this—they even told me to wait six months and brought up things like vanity, saying, “You wouldn’t want to have a scar.” I told them that I didn’t care about scars, and that I was the mother of two young boys.
Then I went home and called my gynecologist in the States and told her that I’d been instructed to wait on the lumps. She replied: “you can never wait.” She said, “You go in and you find out,” so the following day I had an on-the-spot lumpectomy in Beijing.
Q: What were the greatest challenges of dealing with cancer treatment while juggling career with family, as well as living in a foreign country?
Susan: The biggest challenge of early diagnosis is incorporating the disease into your life. You might go through some rather distinct phases. I found it comforting to read materials that described the very same things I was experiencing. There was disbelief, and then fear, then anger, sadness, you name it. It was the full spectrum of emotions.
I left Beijing after my first surgery; the majority of my remaining treatment took place in the States. I joke in my book that my cancer was very convenient, because it came in the late spring, and I could pull my kids out of school early.
One of the biggest struggles for me was learning how to talk about cancer to my kids. All my early diagnosis worry was focused on my boys. Early diagnosis is fraught in so many ways. I kept asking myself, “Who knows how bad this cancer is?” It went right to my mortality. I wondered if my children were going to grow up motherless. Then I met a wise therapist in Boston; she helped me enormously by giving me the courage to tell my children the truth about my cancer. She made me realize how exhausting and hard it is to lie to your children.
I flew back home to Beijing and told the boys, and it was such a relief. Everything shifted then. I only gave them the information they could manage about the disease, but I used the words breast cancer. All they wanted to know was that I was going to be ok. Once I realized this, I saw that I was the one with the most fear about the cancer, not them. I figured out that I was the one that needed to manage this fear.
Ultimately, I had no sense of how cathartic talking and writing about cancer would be—it demystified it for me and helped me make sense of the disease and how it had affected my family.
Q: What kind of impact did early detection have in your experience?
Susan: Early detection saved my life. I had small tumors but they were very aggressive. I think most breast cancers have their own surprises and their own stories and mine was no exception. I get very upset when I hear people discussing whether or not early detection is effective. I know so many women who found their cancer through early detection. I’m actually a proselytizer for early detection.
Q: What do you think needs to change regarding breast cancer early detection?
Susan: I think there’s often a gap between what the science community understands about breast cancer through their data, and what we as patients know to be true through our personal narratives. We all know someone who was young, had a mammogram, and found a tumor. The language and messaging around early detection needs to change. In the trenches at cancer centers all over the country, early detection often means hope.
The public also needs a better understanding of the nuances of breast cancer– I call it the different flavors of cancer in my book, because there are so many. Sometimes I found a shocking willingness on the part of our community to believe that we have found a cure for breast cancer. You’ll hear it at a cocktail party or the side of a soccer field. Someone unknowingly will say to me, “It’s so great that there’s treatment that can cure breast cancer now.” I always find myself incredulous at this. There is effective treatment when the cancer is detected early. But the fact remains that cancer is a really complication conversation.
Q: What impact do you want to have in the world of cancer early detection?
Susan: It’s important to have people who humanize the story and the disease. In writing my book, I hope I may have helped bridge the connection between the disease and the personal stories we all carry with us. I find that people are often really isolated with their disease and their diagnosis. I’ll go to a cancer center or a book event, and I’ll be so moved by the people who have come out for the reading, because they want to hear a story of hope, and they want to be connected. People in the universe of this disease are seeking connectivity, and they’re looking for how to make sense of it. If anything, I realized I could tell my story and help people feel less alone. Also, my story has a happy ending, and I can offer that up. It’s not a fairy tale ending, but a real one, and that gives others hope.