Fertility Preservation Conversations: How Navigators Can Help

October 2020 Vol 11, No 10

Categories:

Fertility

People with cancer now have access to a number of potentially lifesaving treatment options, but many of these put them at a higher risk for temporary or permanent infertility. Progress toward patient access to fertility preservation takes time, and, unfortunately, these conversations are still not being had with patients nearly as often as they should be (reportedly less than half of oncologists are discussing this with their patients). But according to Megan Solinger, MHS, MA, OPN-CG, the hardest step is the first one, and that step starts with the oncology navigator.

At the AONN+ 2020 Virtual Midyear Conference, Ms Solinger provided an in-depth look at the ins and outs of fertility preservation in patients with cancer and armed navigators with the knowledge to talk about it with their patients—particularly adolescents and young adults (AYAs) between the ages of 15 and 39 years—candidly and confidently.

“Fertility preservation is a time-sensitive and logistic-heavy process, so if someone needs to pursue it before treatment, it should take precedence over anything else,” said Ms Solinger, director of patient navigation and AYA patient navigator at the Ulman Foundation in Baltimore, MD. “Patient navigation requires flexibility, and when something like fertility preservation comes up, this is when you need to be flexible.”

Although the ASCO Guidelines previously stated that oncologists should have these conversations with patients, they have since been amended to encompass the entire medical team. Although this has its benefits, mainly that the responsibility does not fall solely on the oncologist, it also makes it a little “muddier” when it comes to determining who should be initiating these conversations, she noted.

“Fertility preservation should always be brought up, and we shouldn’t assume that someone else is talking about it,” she said. “Just assume that you should be having that conversation with your patient, or at least check to make sure that someone else will be discussing it with them.”

Why Is This Conversation Important?

Fertility preservation is an acute issue, but it is also a survivorship issue with potentially far-reaching psychological and social implications on a patient’s quality of life. Despite this, a number of factors might be standing in the way of these conversations.

According to Ms Solinger, everyone on the medical team should be prepared to discuss fertility preservation, and fertility preservation counseling should always be conducted before treatment begins. “If patients don’t know who to go to on their care team, that’s a barrier,” she noted. “If we’re proactive in approaching patients about making sure the fertility conversation happens, we can eliminate that barrier.”

It is important to keep in mind that providers tend to have just as many barriers as patients. “We need to make sure that we’re not imparting our own personal views and beliefs onto patients,” she advised. “Because this topic can be polarizing.”

Navigators should never assume that the patient is not interested in fertility preservation (eg, if the patient already has children), or that the patient or family does not have the financial means to pursue fertility preservation.

“Sometimes we simply don’t have these conversations because we don’t know what to say,” she noted. But a lack of or limited knowledge of the fertility preservation process should never serve as an excuse. Navigators should educate themselves on the topic and familiarize themselves with the resources that are available to patients.

“In cancer, there are so many logistical issues and timelines that we’re working with and against, and often fertility preservation conversations don’t happen because treatment needs to begin now,” she said. “But these are not reasons to not have this conversation.”

Discomfort around the topic, especially when other people or family members are in the room, is definitely not an excuse, she added. “Our patients have the right to know the potential effects of treatment on their fertility. Remove your personal views, assumptions, and discomfort, and focus on giving them information that can help them make an informed decision,” she said. “This is the ultimate icebreaker, and it will instill trust in your patient and their family to be able to come to you with any issue.”

At the time that these conversations should be happening, patients aren’t necessarily focused on what their life is going to look like after cancer; instead they’re hyperfocused on their treatment and survival. “A lot of people don’t even know that there is potential for infertility with these treatments and procedures ahead of them,” she added. “Even letting them know that this is an option is quite a surprise for some.”

How to Prepare Yourself as a Navigator

According to Ms Solinger, the most effective way to approach these conversations is by simply normalizing the topic.

“This conversation can be uncomfortable, so go in prepared,” she said. “Normalize the conversation, just like we normalize talking about something like advance directives. Your patients will mirror you, so if you’re nervous and anxious, they’ll be nervous and anxious. Tell them this is a conversation you have with all of your patients in this age range.”

Find any local fertility clinics within your hospital system and beyond so you will know what the options are for your patients, she added. Educate yourself on the process of fertility preservation and options and help patients to manage their expectations, but leave the medical consulting to the experts.

The High Price Tag of Fertility Preservation

Then comes the issue of cost. The price of fertility preservation can be prohibitive, especially for the young adult population.

A cancer diagnosis is expensive on its own, “but when the cost of fertility preservation is added to treatment, the financial burden is huge,” she said.

Many female patients are unaware that on top of the cost of initial preservation, they will also have to pay for annual storage, the cost of medication for egg retrieval, and the cost of using the sample through in vitro fertilization down the line. Egg/embryo freezing ranges from about $6500 to $15,000 per cycle, and storage runs about $300 to $600 per year.

“This is typically not covered by insurance, so we have to make sure patients understand that,” she said. “These are big numbers, and the financial piece is one of the biggest reasons people don’t pursue this.”

To help offset the financial burden, Ms Solinger refers her patients to Livestrong Fertility. Local nonprofit organizations also offer small grants, and sometimes medications can be donated from pharmaceutical companies or fertility clinics to offset the additional financial burden.

“It’s worth asking financial advisors at different fertility clinics if they have any organizations they work with that might be able to help,” she said. “Try to get financial assistance from local organizations; it can be piecemeal, a couple hundred dollars here and there, but that can be used to pay for other bills while freeing up the funds to pay for fertility preservation.”

Fertility clinics might also offer complimentary or reduced-cost consults. According to Ms Solinger, they will often expedite the process of getting a patient in for a consult if a cancer diagnosis is made clear. “It’s not ‘pulling the cancer card,’” she said. “This is legitimately something that is very time-sensitive and needs to be expedited.”

Finally, encourage patients to call their insurance company to see if any of these costs are covered, and remind them that a cancer diagnosis does not equal a diagnosis of infertility. Sometimes insurance companies will deny claims related to fertility preservation because it automatically implies an infertility diagnosis, she said. However, iatrogenic infertility (infertility caused by a necessary medical intervention) is a completely different issue and might be covered for some patients.

A cancer diagnosis is overwhelming, and patients are often told what they need to do to stay alive without much regard for their personal opinion or time frame. However, they do have a say in their own fertility preservation, Ms Solinger said, and the job of the navigator is to educate their patients to make a well-informed decision (albeit in a short amount of time) about what is best for them and their unique situation.

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Last modified: August 10, 2023

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