Bioethics Forum Essay
Cancer and Fertility: Learning from Survivors
As modern medicine improves survival odds, many young cancer patients are living long lives that bear the markings of the disease and its treatment. The side effects of chemotherapy, radiation, and surgery often include damage to fertility, such as early menopause or the loss of viable sperm. A recent issue of the journal Narrative Inquiry in Bioethics collected personal stories from patients who have confronted cancer diagnoses that threatened fertility.
Maggie Rogers, now in her late 20’s, was diagnosed with stage 3 kidney cancer when she was four-and-a-half years old. She has since faced many adverse effects from the treatment, including skin cancer caused by the radiation. “Infertility,” she wrote, “was never weighed the same as other late term effects—and perhaps rightfully so. Infertility, if it happened, wasn’t going to kill me.” (Read Maggie’s story here.)
There are many reasons a doctor might fail to mention risks of infertility, or that a patient might choose not to undergo procedures to mitigate the risks. Fertility preservation is expensive and often not covered by insurance. Egg freezing or the creation of embryos takes time, and can delay treatment in the midst of a serious and frightening diagnosis. When a young girl or boy is gravely ill with cancer, physicians may reason that the patient is too young to think about reproduction and focus instead on saving the child’s life.
Patients (or their parents) face big decisions, with competing advice. “The oncologists like to employ fast-paced, aggressive treatment options, while the fertility specialists need time and youth to maximize conception odds,” wrote Maggie Woodlief. She received a breast cancer diagnosis the same day her husband proposed. “You must be the one to weigh the options and decide.”
As health care scrambles to keep up with the changing landscape of cancer treatment, communication between doctors and patients, or between oncologists and fertility specialists, falls through the cracks. “Each specialist saw reproductive health as something the other should manage,” wrote Teresa K. Woodruff, an oncologist who established the term oncofertility and wrote a commentary on the collection of stories.
Many of the patients who shared their stories in Narrative Inquiry in Bioethics discussed insufficient communication on the topic of fertility. “Had someone sat down with me to discuss what my options might be, even to ask if I was interested in knowing about them, it could have changed everything,” wrote Bailey Hoffner more than a decade after receiving cancer treatment as a 13-year-old. She may not have done anything differently, she said—options for women were limited at the time, and her treatment began urgently—but it would have helped, in the years after, to feel she made the choice for herself.
“Somewhere between the age of 4 and 22 I lost the ability to have children—all the cards were off the table,” wrote Rogers. Her doctor and mother tried to talk to her about the sudden news of her infertility. “They asked how I felt. I told them I was devastated—absolutely devastated. We’ve never talked about it again.”
Alexandria Yi reflected on enduring chemotherapy and radiation secretly, unable to face the terror of a cancer diagnosis at age 22. “Not once was fertility ever brought up,” she said. “At no time did anyone bother to mention it.” In a cancer support group, she discovered that infertility is a common side effect of chemo and radiation. She asked her doctor about it at the end of her treatment. “I will never forget the look on my doctor’s face, which I distinctly remember as pity,” she wrote. “I knew what it meant. It was in that moment that cancer had changed me.”
The stigma of infertility lurks in many of the stories. In her essay, Grazia de Michele confronted this stigma head on. Diagnosed with breast cancer at age 30 and facing years of treatment, de Michele decided not to delay her treatment to deal with fertility preservation. “When I tried to imagine the years to come,” she wrote, “the fear of not being able to see them became unbearable.”
In the time since, de Michele has reflected on the possible risks of pregnancy after breast cancer and her persistently uncertain future—the particular type of cancer can return even decades after the first diagnosis. She has also thought about stigma. “Even when affected by serious illnesses,” she asserted, “women are expected to put heterosexual reproduction before everything else, including their own lives.” Getting pregnant, she said, is proof to the world that the cancer has been “beaten.”
Rogers considered a similar theme. At 26, she entered premature menopause. “Being a cancer survivor comes with a lot of pressure: pressure to be perfect, pressure to be healthy, pressure to be in a constant state of appreciation for the gift of life.” She reflected that infertility “ripped the mask off my survivorship experience” which meant that she was “no longer the embodiment of the inspirational survivor.”
Looking back, though, Rogers doesn’t think her treatment should have gone differently: “There weren’t options. There wasn’t time.”
The collection of stories shows the complexity of the problem. How does fertility preservation hold up to the need to preserve a life? How could a patient afford it? What about the risks of pregnancy after cancer?
One simple lesson from these stories is that patients want to choose for themselves in a manner that aligns with their values. Fertility specialists and oncologists, communicating and working together, can help guide cancer patients to a decision the patients are at peace with. Cancer wreaks havoc on the body and on the most carefully laid plans, but patients can find strength in their own agency. They can steady themselves, when looking forward and when looking back, on their ability to weigh the options and decide.
Mary Click is the communications coordinator for Narrative Inquiry in Bioethics.