In her research studies with young adult survivors of childhood cancers, pediatric oncologist Natasha Frederick, MD, MPH, of Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, explored sexual dysfunction in survivors between the ages of 18 and 30 years old. She found that most of these young survivors reporting such problems keep their concerns from partners, loved ones, and caregivers, and miss the opportunity to get clinical guidance that can help and often alleviate their fears.
“Prior treatment shows that up to 30 percent of young adult cancer survivors report some kind of issue with sexual function,” says Frederick. “They range from physically-based problems like erectile dysfunction or vaginal dryness to psychological concerns including poor body image related to physical changes from treatment, concerns about current and future fertility, and disclosure of cancer history to a new romantic partner.”
Frederick recommends that pediatric cancer survivors — and their caregivers — keep these thoughts in mind when it comes to discussing sexuality and fertility:
Check in annually and know your history. Sexual and fertility problems can change over time and differ based on what medications you took or therapies you were exposed to as a patient. Pediatric cancer survivors should have annual oncology check-ups, and keep updated treatment and medication plans records to share with new physicians.
Don’t be shy—speak your mind. “One patient told me that after his oncologist cured his cancer, he didn’t want to bring up something ‘silly’ like sex,” Fredrick recalls. “These issues are very normal, and often they can be helped. But not if you don’t bring them up.”
Kick out your parents. “It can be difficult to talk about this stuff, and with your parents or other family members there, it’s nearly impossible,” Frederick says. “Don’t be afraid to ask them to leave the room so you can be alone with your provider.”
Men: Face the stress, get the test. Male survivors can learn their fertility status with a simple sperm test, and if their counts are low, they can take steps to bank them if they want to have children later. Other common problems like erectile dysfunction or premature ejaculation can also be shared with an oncologist, who can help make the appropriate referrals to get a patient needed care. “Anxiety and stress over not knowing may contribute to problems,” adds Frederick. “It is important to speak with your physician to identify the best approach for you.”
Women: Don’t wait until it’s too late. Most pediatric cancer treatment on girls will not lead to infertility, but young women will have a smaller window to conceive. They are more likely to go into premature menopause or ovarian failure, so if they desire children they should start meeting with a reproductive endocrinologist in their late teens or early 20s to discuss a fertility preservation strategy, Frederick explains.
Seek out a Sexual Health Program. Patients at Dana-Farber/Boston Children’s receive consultations before treatment through our Fertility Preservation Program. After treatment, they and their partners have access to educational workshops and consultations from psychologist Sharon Bober, PhD, director of the Sexual Health Program, addressing areas such as sexual dysfunction and discomfort, coping with infertility-related distress, changes in body image, and decreased sexual desire.
“There has been significant progress in understanding the impact of cancer treatment on fertility that has allowed us to make adaptations to treatment regimens,” says Frederick. “For example, the chemotherapy treatments originally used for Hodgkin lymphoma used to have a huge impact on infertility in male patients, but modifications in the treatment regimens have allowed us to maintain excellent outcomes while all but eliminating the risk to fertility. Unfortunately, we have not been able to do this with all cancer types as of yet – therefore it is important for young patients to understand their risk by speaking with their oncologist.
“The more we learn about pediatric survivors now reaching young adulthood,” adds Frederick, “the more we will be able to help them and tailor future treatments so that they are less damaging.”
Learn more about survivorship care for pediatric cancer patients from Dana-Farber’s Perini Family Survivors’ Center.