Let’s Talk About It: Young Adults, Cancer, and Planning for a Family

News of a cancer diagnosis will shake even the most solid foundation. But young adults, who arguably seem more removed from illness and their own mortality, may have additional challenges, especially when considering treatment options—including radiation, chemotherapy, and surgery—that may interfere with their ability to go on to have biological children.

In “Preserving the Future,” an article published in the latest issue of Cancer Today, cancer survivors, oncologists, and reproductive specialists discuss the progress and challenges associated with exploring fertility preservation options for young adults, defined most often as those between the ages of 15 and 39.

Perhaps what was most telling about the story wasn’t whether these young adults ultimately decided to go forward with fertility preservation, but rather how empowering having an honest discussion with a health care provider about these options can be, even when patients are unsure of their next steps.

Ashley Goldman, an ovarian cancer survivor, and her husband, Jamie, recently got married and hope to have children. Photo by Peter Oberc Photography.

Ashley Goldman was just 23 years old when she learned she had a stage III immature teratoma, a rare type of ovarian cancer that had spread to her stomach lining. At that time, she was dating the man who is now her husband for just eight months. “I knew at that point we would probably end up together, but I was in no position emotionally to make a decision that we’d have for the rest of our lives,” Goldman said. She met with a reproductive specialist to explore her options, but when her oncologist explained that her chemotherapy regimen would most likely not affect her ability to have children, she decided not to pursue fertility preservation.

Goldman, who lives in Greenwich, Connecticut, had surgery to remove her left fallopian tube and ovary, and then completed nine weeks of a chemotherapy protocol, known as BEP (bleomycin, etoposide, and cisplatin). Goldman now hopes she and her husband, who were married in May, will be able to conceive naturally. “Even though I didn’t make a plan to do anything, I’m glad I went. Just having the conversation opened my eyes to different options,” she said.

Surveys indicate that young adults with cancer do not always receive fertility counseling. One survey published in the Journal of Clinical Oncology indicated that only 47 percent of 516 oncologists referred cancer patients of childbearing age to fertility preservation specialists. In another study published in Cancer, just 61 percent of 1,041 women who received cancer treatment that could affect their reproductive function remembered talking with their doctors about it. Those who did talk about fertility options with fertility specialists and trained fertility counselors reported a better quality of life and less sense of regret years after treatment.

“It’s not uncommon that young adults feel that fertility, or even sexuality, has not been addressed at all within their cancer care,” says Kristin Smith, a patient navigator at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University in Chicago. Smith specializes in helping newly diagnosed cancer patients through fertility preservation decisions and attends meetings with patients and fertility specialists. She says patients who are not informed often feel a lot of regret and anger “since no one thought to say, ‘This may mean that you can’t have your own children in the future.’ It’s frustrating for young adults to not have been given the full picture.”

The best time to have a discussion about fertility preservation is before chemotherapy, radiation, or surgery, experts say, so patients have the additional hurdle of finding the time to meet with a reproductive specialist. In addition, many factors, including age, treatment, and type of cancer can affect a person’s future ability to conceive and carry children. (Learn more about specific treatments that can affect fertility.)

To provide guidance, the American Society of Clinical Oncology issued clinical practice guidelines in 2006, with updates in 2013, emphasizing that health care providers should talk to their patients, and the parents or guardians of minors, about the effects of cancer treatment on fertility. The guidelines also stress that providers should refer patients to reproductive specialists, who can assist them in choosing fertility preservation options.

To learn more, read the full story in Cancer Today, access patient resources, and explore financial assistance programs for women and men.

Cancer Today is published by the American Association for Cancer Research as a resource for cancer patients, caregivers, and survivors.