When the Clock Is Ticking: The Importance of Fertility Preservation for Adolescent and Young Adult Patients with Cancer

AONN+ 2020 Conference Highlights Special Feature —January 4, 2021

For patients with cancer in their childbearing years, fertility preservation is a time-sensitive survivorship issue that must be addressed. Traditionally considered the responsibility of the oncologist, conversations around fertility preservation have become a duty with which the medical team as a whole is charged, thanks to 2018 guideline updates from the American Society of Clinical Oncology (ASCO).

“We want to try to have this conversation before any form of treatment is introduced into their body,” said Megan Solinger, MHS, MA, OPN-CG, Director of Patient Navigation and Adolescent and Young Adult (AYA) Patient Navigator at UMMC Ulman Foundation, Baltimore, MD.

Sharing insights on the importance of fertility preservation for AYA patients with cancer, she also discussed how to confront the issue to avoid a missed opportunity for patients.

“I always say fertility preservation is like an insurance policy for patients,” Ms Solinger said.

Despite the urgency of preserving fertility before treatment ensues, less than half of oncologists discuss the topic with patients, according to Ms Solinger. Faced with multiple barriers, oncologists, and other healthcare providers—including navigators—often find themselves avoiding the topic, to the detriment of the patient. Some obstacles to such discussions are providers’ belief system surrounding fertility; assumptions about the patient’s interest in, or ability to afford, fertility preservation; lack of knowledge; focus on treatment and survivorship; and general discomfort with discussing it.

From the patients’ perspectives, barriers to preserving fertility include financial constraints; focusing on treatment and survival; lack of time to pursue fertility preservation before the start of treatment; lack of knowledge; childbearing being a distant consideration; no current desire to have children; and uncertainty about who to approach with their concerns about fertility.

“That may be a distant thought,” Ms Solinger said, adding that some AYA patients may feel that they do not want children but such a decision may change over time. “We as people evolve, we grow, we have experiences, and we may change our minds about things.”

Preparing for conversations about fertility preservation involves becoming educated on available options, the processes involved, and their costs, as well as resources available to patients, according to Ms Solinger. As part of this preparation, navigators and other providers should familiarize themselves with fertility clinics within their health system or elsewhere, with which they can form partnerships and referral mechanisms to expedite the process for patients.

“Once they finish treatment, they can get their fertility checked by a reproductive endocrinologist,” she said. “This is something I recommend.”

When it comes time for “the talk,” it is important to first gauge the level of knowledge and understanding on the part of the patient and family members, Ms Solinger said. From there, the provider should explain the process of fertility preservation, along with what to expect, and available options. The patient and family members should emerge from the discussion feeling empowered to begin taking action, if desired.

“I mention to people that there are family-building options besides having a biological child,” she said. “It is a tough conversation to have but there are things that give people hope, no matter what the situation looks like.”

Key things to remember when having fertility preservation discussions include:

  • Ask patients if anyone has discussed the topic with them
  • Find out who the patient would like in the room for the discussion
  • Speak in terms, and at a level, the patient understands
  • Be patient, understanding, and thorough
  • Repeat what has been discussed; if possible, use the teach-back method
  • Provide informational handouts
  • Give the patient and their family time to discuss among themselves
  • Check repeatedly with the patient about their final decision
  • Document all information in the patient record
  • Go in prepared.

Take Charge (letstakecharge.org) is a robust resource tailored to the needs of young patients with cancer, as well as their caregivers and healthcare providers. In addition, the Moffitt Cancer Center offers a free, online 8-week program called ECHO (Enriching Communication Skills for Health Professionals in Oncofertility), which equips clinicians with the necessary skills to help patients traverse the terrain of fertility preservation.

“It is one of the best training programs I have found out there,” Ms Solinger said.

With costs for fertility preservation ranging in the thousands and third-party options reaching into the tens of thousands, it is fortunate that resources exist to offset the financial burden. Organizations including Livestrong, Team Maggie for a Cure, and Verna’s Purse offer financial assistance, and local nonprofits may offer smaller grants. Pharmaceutical companies and fertility clinics may donate medications, and oncofertility consultations may be offered free of charge. In addition, providers should encourage patients to check with their insurance companies regarding coverage for iatrogenic infertility, Ms Solinger said.

Institutions should enact a fertility preservation policy that applies to any type of iatrogenic infertility. A requirement of Centers of Excellence, such a policy should be easy to follow and access.

Key Points

  • Be patient, understanding, and thorough
  • Speak in terms, and at a level, the patient understands
  • Repeat what has been discussed; if possible, use the teach-back method
  • Check repeatedly with the patient about their final decision
Related Articles
Fertility Preservation in Patients with Cancer: How Navigators Can Get the Ball Rolling
June 2022 Vol 13, No 6
Are you prepared to discuss fertility preservation with your patients?
Addressing Barriers to Fertility Preservation for Cancer Patients: The Role of Oncofertility Patient Navigation
Caroline S. Dorfman, PhD, Juliann M. Stalls, PhD, Coleman Mills, MA, Shannon Voelkel, BS, Mallori Thompson, MA, Kelly S. Acharya, MD, Karen C. Baker, MD, Lars M. Wagner, MD, Nolan Miller, MHA, Amy Boswell, MSN, Cheyenne Corbett, PhD
October 2021 Vol 12, No 10
The authors discuss key strategies to address the multilevel barriers to fertility preservation for oncology patients.
2020 AONN+ Award Winners
January 2021 Vol 12, No 1
Each year, at the AONN+ annual conference, we pause to take note of the navigators and organizations among us who have made a significant impact in the field of oncology navigation. Although virtual, 2020 was no different, and it was with pride that we announced the 2020 class of AONN+ Award recipients. It is the distinct honor of the JONS Editorial Board and the AONN+ Leadership Council to recognize the navigators and organizations in our community who have made considerable contributions to our chosen specialty. This class of awardees includes a stellar group of navigators and organizations, each with their own unique and inspiring stories. Below, we tell their stories in the hope it provides inspiration to you in your professional life as an oncology nurse navigator or a patient navigator.
Last modified: August 10, 2023

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