At its core, fertility preservation in patients with cancer is a survivorship issue, according to Megan Solinger, MHS, MA, OPN-CG, Director of Patient Navigation at the Ulman Foundation.
When treating the adolescent and young adult (AYA) population—patients ranging in age from 15 to 39 years—discussions about fertility are vital, but far too often, are not taking place. Infertility can have huge psychological and social implications on patient quality of life, but less than 50% of physicians are bringing up fertility preservation with their patients who are of childbearing age.
“We should strive to be at 100%,” said Ms Solinger at the AONN+ 12th Annual Navigation & Survivorship Conference in November 2021.
According to the ASCO Guidelines for Fertility Preservation, all providers caring for adult and pediatric patients with cancer should be prepared to discuss fertility preservation with their patients and should address the possibility of infertility as early as possible before treatment starts. However, the navigator plays a particularly crucial role in facilitating these discussions with their patients.
Why Is Fertility Preservation So Important?
Often, patients are not aware of the risk of infertility due to cancer treatment, and they are unaware of fertility preservation options.
“A lot of times, patients have absolutely no idea that cancer treatment is going to have any sort of impact on their fertility, whether it’s a permanent or temporary infertility issue,” said Ms Solinger. “This is something that surprises a lot of people, and we owe it to them to have these conversations.”
In some cases, these conversations give patients some control in the decision-making process and allow them to prepare for long-term decisions in terms of family planning. This knowledge also give patients hope, regardless of their diagnosis or prognosis.
“Even if someone is unable to pursue fertility preservation—whether it’s due to a lack of desire, money, time, whatever the issue may be—it gives them hope that at least they knew,” she said. “On the other side of treatment, they won’t feel blindsided, like this is something that was taken from them.”
Patients, especially younger patients, may also change their mind about having children many years later, so fertility preservation often serves as an “insurance policy” for having biological children of their own.
Fertility Preservation 101
Collecting a semen sample from a man is relatively easy, but egg retrieval is decidedly more complicated, time-consuming (2-4 weeks for 1 round of egg retrieval), and expensive. However, after retrieval, for both men and women, the cryopreservation process enables samples (egg, semen, or embryo) to be stored for an indefinite period.
“Because a lot of people are familiar with in vitro fertilization (IVF), I tell female patients that the process is like doing IVF—without reimplanting the embryo into a woman’s body—and instead preserving either the egg or embryo for future use,” she explained.
In addition to egg retrieval, other experimental options do exist for female patients (ie, monthly ovarian suppression and ovarian transposition). However, currently, all standard-of-care fertility preservation options are for postpubertal males and females; for children who have not yet reached puberty, fertility preservation methods are still considered experimental.
How Much Does It Cost?
“The part that I hate talking about is the cost,” said Ms Solinger. “Patients think this sounds like a great option, and then you just see their faces drop when they hear how much fertility preservation is going to set them back.”
The financial hardship of cancer on a young adult is huge, but the additional cost of fertility preservation—about $10,000/cycle for egg freezing (plus storage, cost of using the cryopreserved sample down the line, etc)—can be prohibitive.
“For a lot of patients, the process is not fully covered by insurance, so legislation and working with insurance companies is really, really important,” she noted. “This cost is such a barrier to patients.”
What Can Navigators Do?
Ms Solinger pointed out several well-known assistance programs and avenues that can help navigators to offset some of these costs for their patients, including:
- The Livestrong Fertility Preservation Financial Assistance Program
- Team Maggie for a Cure, Verna’s Purse
- Small grants from local nonprofit organizations
- Donated medications from pharmaceutical companies or fertility clinics
- Oncofertility consults can often be complimentary (helping to inform patients of their options before being scared off by the price tag of fertility preservation)
- Some clinics have payment plans or financial programs (they will probably not come right out and tell you, so always ask!)
- Encourage patients to always call their insurance company to see if they cover iatrogenic infertility. Importantly, these patients do NOT have a diagnosis of infertility; iatrogenic infertility is fertility impairment caused by medical treatment
How Should Navigators Use This Information?
“To prepare for these conversations, I use charts and similar resources to educate myself, the navigator, on the drugs the patient is to receive, as well as their risk classification,” she said, noting that she does not cite exact percentages with patients as to their chances of becoming infertile.
It’s also crucial that navigators and other cancer providers don’t let their own barriers get in the way of having these conversations with patients. These barriers might be their own personal views and beliefs on fertility, assumptions that the patient is not interested in fertility preservation, lack of knowledge about fertility preservation options (educate yourself!), or general discomfort around the topic.
She urges navigators to familiarize themselves with the resources available to them (ie, does your institution have a reproductive endocrinology and infertility clinic/practitioner? Does your community have local brick and mortar fertility clinics outside of the hospital setting?). Navigator trainings/resources (https://echotorch.org/), creating your own educational handouts for patients outlining options and local resources, and tools like Fertility Scout 2.0 from the Alliance for Fertility Preservation can also be incredibly helpful in facilitating these conversations, she said.
“As navigators, one of our responsibilities is knowing what resources are out there for our patients, so that fertility preservation is not a barrier. So understand what’s in your hospital, as well as what’s in your backyard,” said Ms Solinger. “Go in prepared, bring information to your patients so that they can make an informed decision, and be patient and personal in your approach to fertility preservation.”
Used with permission from the Journal of Oncology Navigation & Survivorship. Copyright © 2022 The Lynx Group.