My parents were so concerned with getting me to that all-important 5-year survival benchmark, they didn’t realize the long-term impact their actions would have on my life.
—Hope Haefner, MD
When I was 9 years old, a bout of nausea, vomiting, and abdominal pain sent me to the emergency room. The physicians diagnosed appendicitis and rushed me to the operating room. But what the surgeon found instead was a 10-cm-wide, grade 2, immature teratoma. In 1968, treatment for malignant ovarian tumors typically involved total abdominal hysterectomy with bilateral salpingo-oophorectomy and massive doses of cobalt radiotherapy.
Even with all this radical therapy, the doctors informed my parents that I would be dead within 6 months and that they should make me happy in the time I had left and not tell me that I had cancer. After 6 months passed and I remained well with no signs of recurrence, my parents decided that if I could stay cancer-free for 5 years, they would tell me then about my cancer diagnosis and be able to reassure me with some certainty that I was cured of the disease.
Unfortunately, right before I reached the fifth-year mark, when I was 14, episodes of nausea, vomiting, and abdominal pain once again sent me to the emergency room. When the resident on duty asked about my having had my ovaries and uterus removed because of ovarian cancer, I told him he had me mixed up with another patient. When he assured me that he was reading the right medical chart, the news was devastating.
A medication error, which sent me into cardiac arrest—and near death again—added to the horror and confusion I was feeling. The good news was that my symptoms were the result of a bowel obstruction caused by scar tissue from my past surgeries and not a recurrence of my cancer.
Keeping Cancer a Secret
After I was released from the hospital, my parents explained why they had kept their secret of my cancer diagnosis from me. I knew my parents meant well and had just wanted to protect me, but that didn’t stop me from feeling angry and resentful that I hadn’t been told the truth from the beginning.
As I reached puberty, I had often wondered why I didn’t start menstruating like my friends, but my parents would tell me not to worry. They were so concerned with getting me to that all-important 5-year benchmark, they didn’t realize the long-term impact their actions would have on my life.
Today, the dialogue between physicians and their young patients is more open and honest. In my work as a physician at University of Michigan Health System, my colleagues and I routinely include children and adolescents along with their parents in discussions of their cancer and treatment options.
Raising Awareness of Childhood Gynecologic Cancers
As an adolescent, I was never able to completely come to terms with my diagnosis and its cover-up, and by the time I was in my 20s, I was still having a difficult time accepting my being a cancer survivor and the aftereffects of infertility. However, that experience led me to a career in medicine, specializing in obstetrics and gynecology, and a deep desire to make a difference in the lives of children and adolescents with gynecologic cancers.
It has also made me a more compassionate physician. As a cancer survivor, I have a better understanding of the fear and confusion patients face when given a cancer diagnosis. I will often ignore the brief time period normally allotted to spend with patients and instead give them ample face-to-face contact so they can process their diagnosis.
I’m also very involved in raising awareness of childhood gynecologic cancers and in bringing the various medical disciplines—medical, surgical, radiation, and pediatric oncologists—together to treat cancers of the ovary, uterus, cervix, vagina, and vulva. Although the exact numbers of girls affected by childhood gynecologic cancers is unknown, according to the National Cancer Institute, ovarian cancer alone affects nearly 290 children in the United States under the age of 20.1
Coming to Terms with the Past
Although I’ve been cancer-free for 46 years, I worry about the small potential for a soft-tissue sarcoma developing from all the cobalt radiation I had. But mostly I concentrate on the wonderful life I have. I’m happily married, and we adopted two terrific children to complete our family.
I also have a profession I love that gives me the opportunity to work with other providers to help young patients with cancer participate in their treatment decisions, recovery, and survival. And in the process, I’ve finally made my peace with my own cancer history. ■
1. National Cancer Institute: Surveillance Epidemiology and End Results. SEER Stat Fact Sheets: Ovary. Available at http://seer.cancer.gov/statfacts/html/ovary.html. Accessed May 23, 2013.
Hope Haefner, MD, 55, is Professor in the Department of Obstetrics and Gynecology at the University of Michigan Health System in Ann Arbor, Michigan, and the Founder and Executive Director of the Childhood Gynecologic Cancer Association, cgynca.org.