Kathy LaTour is a breast cancer survivor, author of The Breast Cancer Companion and co-founder of CURE magazine. While cancer did not take her life, she has given it willingly to educate, empower and enlighten the newly diagnosed and those who care for them.
Childhood and young adult cancer survivors need fertility preservation information, but are they getting it from their oncologists?
In 2006, the American Society of Clinical Oncology (ASCO) released guidelines stating that:
“Oncologists should address the possibility of infertility with patients treated during their reproductive years and be prepared to discuss possible fertility preservation options or refer appropriate and interested patients to reproductive specialists. Clinician judgment should be employed in the timing of raising this issue, but discussion at the earliest possible opportunity is encouraged. Sperm and embryo cryopreservation are considered standard practice and widely available; other available fertility preservation methods should be considered investigational and be performed in centers with the necessary expertise.”
This year, numerous studies have shown that those guidelines are not being followed, and where fertility preservation consultation is available, guidelines are variable and may be based on age and cancer type.
Recently, researchers looked at a number of National Cancer Institute-designated comprehensive cancer centers and pediatric centers to assess how consistent they were at providing information and access to fertility preservation resources to patients. Gwen Quinn, PhD, of H. Lee Moffitt Cancer Center and Research Institute in Tampa, Fla., along with lead author Marla Clayman, PhD, of Northwestern University, found that most cancer centers did not have policies or procedures in place for fertility preservation.
Quinn, who will also be among panel members who assess the ASCO guidelines this fall, also led a study of oncologists’ practice behaviors that concluded that 77 percent of physicians discussed fertility options and 47 percent referred patients to a specialist. Quinn conceded the difficulty in assessing adherence because of confusion over where the adolescent population is treated (whether in adult or pediatric facilities), where policy and guidelines may vary based on being a minor versus an adult, and who can or should be present when fertility discussions are held with the pediatric oncologists.
In regards to knowledge of the ASCO guidelines, more than a third of oncologists surveyed were not aware of the recommendations, and of those who were familiar with the guidelines, only 18 percent of oncologists referenced them.
“We are still a long way from having something very concrete,” Quinn says. “A guideline is a guideline. It’s not a mandate. We want a referral to a reproductive specialist to be adopted as a standard of care, so if oncologists don’t do it or don’t document having done it, they are not following best practices. ”
When [cancer patients] are going through treatment, many are too overwhelmed to think about fertility...
The likelihood of becoming infertile due to treatment varies depending on a number of factors including age, receipt of chemotherapy, type of surgery and where radiation was delivered in the body. Options for preserving fertility for men and women include sperm and embryo freezing and oophoropexy, or repositioning the ovaries out of the radiation field. The success rates of these procedures vary and can be cost prohibitive as they may not be covered under insurance. The nonprofit organization, Fertile Hope, which provides fertility information and support for patients and survivors, also offers financial assistance.
According to statistics cited by Quinn and colleagues from a 2008 study using data from 1,030 pediatric oncology patients, 63 percent of patients engaged in conversations with their doctors about fertility, but only 1 percent of female patients were referred to a reproductive specialist.
“There are many reasons this doesn’t occur,” Quinn says. “People who have a hematologic malignancy need to start treatment immediately. For females there isn’t time, while males can bank sperm.”
Quinn says her group is trying to educate patients that there may be a second opportunity for fertility options after treatment has ended and before premature ovarian failure that may occur a few years after treatment ends. “They may not be ready to start a family after treatment is over because of age or going back to school, but they could look at fertility preservation options then.”
In addition to this post-treatment fertility information, they also need follow-up care around secondary issues, such as the risk of osteoporosis with premature ovarian failure. Discussion of contraception is also important, since the risk of pregnancy and sexually transmitted diseases may still be present.
Cancer centers are navigating these issues in their own way by adding a reproductive endocrinologist to staff or, if the patient prefers, setting up phone calls. At Memorial Sloan-Kettering Cancer Center in New York City a clinical nurse specialist provides physicians with education and information to offer to patients and also counsels patients about the effects of treatment and options for fertility preservation.
Quinn also recommends patients use Fertile Hope to understand their risk of losing fertility from the drugs listed on the website. (Patients can also help determine their risk using the site’s fertility risk calculator).
“When they are going through treatment, many are too overwhelmed to think about fertility, and they are grateful to know they can come back later and know someone will be here to talk to them.”