Only half of adolescents and young adults with cancer get fertility counseling before treatment

For a year before an osteosarcoma was found in her right proximal tibia, Sammy Ulloa, pushing through pain, persisted with her training as a Division I track and field and cross-country competitor.

Then, five days before her 20th birthday, Ulloa was diagnosed with the bone cancer that is characterized by aggressive growth and a tendency to metastasize. 

Osteosarcoma primarily affects children and young adults.

“When I was diagnosed, they wanted to start treatment quickly, because it’s a pretty rare and aggressive type of cancer,” Ulloa, a Southern California native, said to The Cancer Letter. “So, within five days, I had my port placed and I started chemotherapy.”

Ulloa did not realize at the time that the treatment would be likely to impact her reproductive health and future fertility.

“I did not have a very extensive conversation about fertility options, or what that would mean for me,” Ulloa said. “What I remember is just them telling me that it shouldn’t affect me—but it was kind of just a ‘We’ll see when we get there, but it’s more important to just start treatment right away.’ So, it was very brushed over. We did not go into depth about it. I really wish we would have, because I did not explore any fertility [preservation] options.”

In the U.S., cancer affects 89,500 adolescents and young adult patients, often called AYA patients, annually, and up to 80% of them are affected by reduced fertility after cancer treatment.

An estimated 70–75% of AYA cancer survivors are interested in parenthood, but only half of them report getting oncofertility counseling and preservation options prior to their cancer treatments, according to results of a cross-sectional study: Patient-Reported Discussions on Fertility Preservation Before Early-Onset Cancer Treatment, published in JAMA Network Open.

“Just under 10% of individuals diagnosed with cancer are of reproductive age. And for many of these cancer survivors, future childbearing is really important, secondary only to survival,” Laurie McKenzie, a reproductive endocrinologist and oncofertility specialist with joint appointments at the University of Texas MD Anderson Cancer Center and Baylor College of Medicine, said to The Cancer Letter. 

McKenzie has been providing oncofertility counseling for more than 20 years. Having a fertility preservation consult for reproductive-aged individuals is extremely important prior to them starting cancer therapy, she said. 

“It’s pretty clear that patients that have had fertility counseling before they start their cancer treatment have decreased long-term regrets and improved quality of life,” she said. “I think that’s fairly undisputed.” 

Fertility preservation counseling communicates optimism about the patient’s prognosis, McKenzie said.

 “If a patient is referred to me, it sends a message to the patient, ‘Oh, my doctor thinks I’m gonna be alive in 10, 20 years, to be able to navigate this—which is really a beautiful thing, quite frankly,” McKenzie said. “There’s no better message of hope than when they’re referred to me, because it’s sending a message–we want you to be able to have these options in the future, because we expect you’re going to do well.”

With cancer, our future is already so completely uncertain, and it’s just devastating when you come to find out that there’s more that you didn’t know about.

Sammy Ulloa

Often, patients with early-onset aggressive cancers don’t have much time to mull over a decision before treatment begins. 

“Overall, information that this is a thing that needs to be discussed is in short supply. It’s just not something you’re thinking. All you can think about is, ‘Oh my gosh, my kid has cancer,’” Ann Graham, founder of the pediatric osteosarcoma nonprofit MIB Agents, said to The Cancer Letter.

“Often, the conversation gets cut short, because in that small clinician’s office is the doctor, a nurse, one or two parents, and a young adult, who does not want to talk about having kids, who does not want to talk about sperm, and eggs, and preservation, and sex. Like, it could not be a more awkward conversation,” Graham said.

The nonprofit has been working on legislation to fund pediatric cancer research. The advocacy is mostly led by osteosarcoma patients and survivors. Sammy Ulloa now volunteers as president of the MIB Agents Junior Advisory Board.

There is a lot of misinformation surrounding young adult cancers, Graham said. She was thrust into the world of pediatric cancers when, in an ultra-rare case, she was diagnosed with osteosarcoma as an adult.

“Before I was diagnosed with pediatric cancer I thought—there’s this one institution that takes care of all of that, and kids with cancer get cured, plus kids are so resilient; they’re going to be okay,” Graham said. “And they’re not. They die all the time. Children and young adult cancers receive so little of the government funding. Less than 4% goes to all pediatric cancers research, of which there are 300 childhood cancer types.”

The pediatric cancers that do get funded often have an adult version of the disease. 

Since osteosarcoma is an aggressive cancer that requires quick decisions, the osteo community is at the forefront of advocating for better guidelines and understanding of oncofertility options. 

In November 2022, Sammy Ulloa had her extensive limb-sparing surgery, where an internal prosthetic was placed in her right leg. She completed chemotherapy and has been in complete remission since May 2023. 

Recently, at age 22, Ulloa started thinking more about her future, which led to exploration of her fertility status. That was when she learned that her chances of childbearing don’t look promising.

“My baseline testing kind of just showed that—it’s not very favorable,” said Ulloa. “So, it is very unfortunate.”

Ulloa said she had no memory of being told that her treatment could result in infertility. Had she had more in-depth conversations with her providers at diagnosis, the outcome might have been different, Ulloa said. 

ASCO expands standard of care

Last month, the American Society of Clinical Oncology updated its guidelines on fertility preservation, now recommending that health care providers include fertility preservation in survivorship care, in addition to offering counseling on the subject at diagnosis.

The update, published on March 20, also recommends offering in-vitro maturation of eggs as an emerging method of fertility preservation for some patients. This change follows a comprehensive review and analyses of the relevant scientific literature on IVM, which was still experimental at the time of the 2018 guideline update.

There’s no better message of hope than when they’re referred to me, because it’s sending a message—we want you to be able to have these options in the future, because we expect you’re going to do well.

Laurie McKenzie

ASCO considers fertility preservation to be medically necessary for individuals undergoing cancer treatments, including chemotherapy, radiation, or surgery, but many patients are unable to access this care due to the high cost of such services and common gaps in health care coverage. 

Despite the clear fertility risks posed by cancer treatment, insurers often deem fertility care as not medically necessary. More than a dozen states have some form of fertility preservation law that aligns with ASCO’s guideline. 

However, the laws may not apply to all patients. There is a patchwork of coverage policies for fertility preservation throughout the United States, with the overall picture largely showing noncoverage.

“ASCO’s latest guideline update on fertility preservation in people with cancer is important, because, for the first time, we are formally recommending that providers include fertility preservation in survivorship care—after cancer treatment—in addition to offering at diagnosis,” Julie Gralow, ASCO’s chief medical officer, said to The Cancer Letter.

Said Gralow:

Regardless of the fertility counseling or interventions that may have happened up front, this care is very important for young adults who are cancer survivors, who have finished their cancer treatmen­t, said John Andrew Livingston, a medical oncologist focused on treating patients with sarcoma, who also cares for a broader spectrum of teens and young adults with a wide range of cancer diagnoses through the MD Anderson Adolescent and Young Adult Program. 

“And actually the impact on fertility can be quite varied, even for patients who have regimens we might consider high-risk for infertility,” Livingston said. “Many of those patients can still go on and get pregnant or father children, but many cannot. So, it’s really important that we don’t assume either way about a patient’s fertility.” 

Livingston said this guideline update emphasizes the need to receive comprehensive care after going through cancer treatment, and that includes thinking about late effects and long-term effects of treatment.

“A lot of times we’re thinking about your heart health, or your kidney function,” Livingston said. “But, also on that list needs to be what is the impact of the treatment on ovarian reserve, ovarian function, and the potential to get pregnant. 

“So, I think it’s an awareness that even when patients finish their treatment, we need to reevaluate the impact on fertility and future fertility.”

This ASCO guideline comes at a time when the Trump administration has laid off the entire reproductive division at the Center for Disease Control and Prevention, just days after Trump described himself as the “fertilization president” at an event marking Women’s History Month. 

A vocal supporter of in-vitro fertilization, Trump has vowed to expand its affordability.

The reproductive health team at the CDC had collected congressionally mandated statistics on fertility clinics’ success rates. Without the workers, it’s unclear who at the department will help fertility clinics comply with the law.

Barriers to care

Those AYA patients who have a conversation about their future fertility are faced with another obstacle: 

Insurance often doesn’t cover the preservation process.

Financial toxicity is a burden to most cancer patients—the additional cost of fertility preservation augments that burden. Insurance often doesn’t consider fertility preservation to be medically necessary. 

Health insurance coverage is significantly influenced by state mandates and legislation. So, patients in different states may have different access to fertility preservation options. 

Some states have advocated for and prioritized fertility preservation, particularly for cancer patients, mandating that private insurance companies cover the cost. 

But, even with those protections in place, the out-of-pocket costs and the degree of coverage can vary quite a bit, Livingston said. Those, of course, depend on individual insurance carriers.

Fertility preservation, particularly for women, often involves stimulation, collecting, and freezing and storing eggs or embryos. This can be an expensive and time-intensive process, with an average cost of $10,000 to $15,000 for oocyte and embryo preservation, and between $500 and $1,000 for sperm cryopreservation—with additional costs incurred for surgical sperm retrieval, as well as annual storage fees.

A significant portion of the costs is not just the professional or facility fees, said Livingston, but the medications—particularly the ones needed for ovarian stimulation, such as follicle-stimulating hormones, and the medications to prevent ovulation, which can cost an additional $2,000 to $4,000. 

For embryo banking or IVF, the procedural costs are significantly higher, McKenzie said. 

“For most of our patients, even when they have some insurance coverage, there’s still a big financial burden,” Livingston said. 

There are philanthropic groups and not-for-profits that will often assist in covering the costs of medications, and different grants or supportive funds that may help offset the costs. 

But the reality is, even with state mandates, insurance, and charitable organizations, a major financial barrier remains. 

“Imagine if you’re newly diagnosed with cancer, you have a lot of medical bills—also you may have to pay to relocate to where you’re receiving your treatment. You may be out of work. So, there’s already a lot of financial strain. Of course, we know for cancer patients, overall financial distress is a major problem,” Livingston said.

The care coordination and the cost of sperm banking is much lower, and the timing and logistics of preserving fertility for young males is much simpler. The upfront average cost of sperm banking and processing the sample, and initial freezing is about $500. 

But even that cost can be an obstacle for many patients and financial barriers are particularly acute in populations already struggling to access the care they need.

“An emerging field”

Over the past ten years or so, thanks in part to leadership from NCI, oncologists have become more focused on problems of adolescents and young adults with cancer, Livingston said.

“We saw that a lot of the outcomes for teens and young adults with cancer in terms of cure rates and survival outcomes were lagging behind the progress being made for younger children and older adults,” said Livingston. “This whole area of adolescent and young adult oncology has kind of been an emerging field over the last decade or so. 

“Working in that patient population, there’s a realization of the very complex, multidisciplinary nature of trying to meet the unique needs of teens and young adults,” Livingston said.

In the throes of treating aggressive disease with toxic therapies, oncologists often forget to sit down and chat with their patients about fertility, an issue that may not seem to be of immediate significance.

“I think as cancer care becomes more and more complex, we’re getting more and more sub-specialized,” said McKenzie. “So, sometimes we forget the importance of these multidisciplinary discussions.” 

MD Anderson’s AYA program seeks to guide the patients through new diagnosis and return them to normalcy after completing cancer treatment. 

“One thing that we saw at our own center, and also there was growing awareness nationally, is that a lot of times these conversations weren’t happening, or were not being done well,” Livingston said. 

A lot of young adults reported that no one ever talked to them at the time of the diagnosis about the impact of their cancer treatment on their future fertility, Livingston said. 

“That’s what we heard first and foremost from patients—that there’s this unmet need where for a lot of young adults, either these conversations weren’t happening or resources weren’t available. Then, sometimes, that results in a lot of regret,” Livingston said.

Some treatments are known to cause infertility or premature ovarian insufficiency. Others—immunotherapy, for example­—have an unknown impact. 

Yet, even in cases where there isn’t time to preserve fertility, and the cancer treatment is very high-risk, patients benefit from having these conversations, Livingston said. 

“Even in situations where the options are very limited, or perhaps there’s not an option at all, to conserve future fertility, a lot of the young adults we’ve talked to have said that it’s a very helpful part of understanding their journey and the future impact, even if they didn’t have the opportunity, that having those conversations early on is really meaningful,” Livingston said.

McKenzie agrees that there has been a shift in attention to early-onset cancer populations, especially towards those with colorectal cancer, a disease that appears to be on the rise in young adults.

“[The focus is] not just on the short term—but with the expectation that these patients are going to live long, happy, healthy lives,” said McKenzie. “For a lot of them, the survivorship piece of family-building is really important. I think we’re doing them a disservice if we overlook it.”

Sammy Ulloa said she wishes her providers would have presented her with more information.

“I didn’t really know what questions to ask because the diagnosis was very abrupt,” she said. “I think even my family—my mom was the one who was with me—she didn’t know what questions to ask either, so we weren’t really sure we were asking the right questions,” said Ulloa. 

“I just wish they would’ve presented more information to me as a patient, and also to my mom—that we could have talked about it, because I think that maybe I would’ve made a different decision as far as perhaps freezing eggs or just exploring my options if I would’ve known that it was going to affect me long term,” she said.

Through her experience, Ulloa connected with other osteosarcoma survivors who had received more fertility counseling. 

One of her acquaintances also spoke with this reporter on the condition of anonymity.

The young woman, whom we will call “Sadie,” lives on the East Coast. She was diagnosed with aggressive osteosarcoma at age 16. 

Fertility and preservation options were discussed with her on the day she received her diagnosis, she said.

“On my first day that I actually went into the oncology clinic, they just did everything,” said Sadie. “They had me meet with the surgeon, and had me meet with my oncologist, and I saw the infusion clinic and everything. One of the appointments I did was with the fertility specialist. And they met with me and presented a few options and the benefits of each.”

Sadie was offered several options for preservation, including tissue sectioning, which was an experimental treatment at the time and typically for children who have not yet gone through puberty, she said. 

Egg retrieval was the option that made the most sense for Sadie. 

“It was really, really overwhelming,” she said. “In a way, I was sort of—not angry, but upset—that they tried to book me for so much in one day. But looking back on it—and I’ve talked to my family about this—I’m just really grateful that they did all of that so upfront and coordinated it all so well. Because it just made things possible, given the timeline. A lot of times chemotherapy does have to start pretty soon, so it’s important to get that stuff done early.”

Sadie’s oncology care providers made the fertility appointments, and navigated the decisions with her and her family, she said, which ultimately led to the decision to preserve her eggs. 

“They didn’t try to push us one way or the other,” she said. “They were actually kind of supportive of doing it. They were kind of like—you have time to do it. From what I remember, they said, ‘If this is something that you think you want to do, you should do it.’”

Sadie said she didn’t want to have conversations about fertility and felt awkward doing so. 

“I just didn’t know what I wanted, because it wasn’t really something that I wanted to think about. I was just uncomfortable about it,” she said. “But my parents were really helpful in all of this.” 

Sadie visited a local clinic, and in the two weeks before her cancer treatment started, she received hormone shots every few days, followed by blood draws to check her hormone levels. 

The retrieval was a one-day appointment, she said.

“I also recognize that it was such a privilege that I was offered that opportunity, because at 16, you don’t really know what you want—but chemotherapy can make that decision for you,” Sadie said.

Sadie said her doctors were thorough and encouraging, and offered to work her treatment plan around fertility preservation. 

“I’m just really grateful that not only did I get to do it, but that I got the support to make it happen,” Sadie said. “And then also I think I was really lucky, because I was at a major cancer center, so they just had a lot of that interdisciplinary professional stuff set up.”

Sadie’s insurance also covered the procedure and storage of eggs, which made the experience and decision even more streamlined, she said.

An “unmet need” in half of AYA patients

The JAMA paper put out a questionnaire administered by investigators with the Reproductive Health After Cancer Diagnosis and Treatment study, an initiative led by Andreana Holowatyj, assistant professor of medicine at Vanderbilt-Ingram Cancer Center, in partnership with 23 community organizations and several patient advocacy groups. 

REACT aims to improve clinicians’ and researchers’ understanding of the unmet care needs of adults younger than 50 with a cancer diagnosis, including fertility, sexual health, body esteem, physical activity, and personal relationships.

The survey question posed to participants in the questionnaire was: 

“Did a healthcare professional involved in your cancer care talk with you about options to preserve your fertility (e.g., sperm banking or freezing of eggs, embryos, or ovarian tissue) before you started cancer treatment?” 

Young patients with thyroid, lung, ovarian, and colorectal cancers reported the lowest prevalence of a fertility preservation discussion with a health care professional involved in their cancer care.

Only 21.4% of patients with ovarian cancer reported a discussion about fertility preservation. 

The percentages reporting a discussion were 44.2% for patients with colorectal cancer, 21% for lung cancer, and 3.6% for thyroid cancer. The patient population represented 30 types of early-onset cancers.

The study included 473 patients between the ages of 18 and 49 who participated in REACT worldwide. The patients were diagnosed between 2013 and 2021. 

The study is the first set of data and results released by REACT. Holowatyj has received NCI’s Method to Extend Research in Time Award to study how cancer treatments impact reproductive health. 

REACT was also supported by the American Cancer Society, NCI, National Institute of Child Health and Human Development, National Center for Advancing Translational Sciences, and the Drs. Sidney and Becca Fleischer Undergraduate Summer Research Fund.

Misconceptions, importance of baseline testing

Discussion about pre-implantation genetic testing of embryos in individuals carrying an inherited cancer-inducing variant is also often overlooked, McKenzie said.

“I have a lot of patients that are very reluctant to consider childbearing because they’re worried about passing on this gene mutation to their offspring,” McKenzie said. “We spend time discussing the ability to reduce the risk of their children carrying that same pathogenic variant that they are carrying.”

That technology is called pre-implantation genetic testing for a monogenic disorder or PGT-M and it can be performed at the time of in-vitro fertilization, she said. 

“When we talk about the percentage of patients that have fertility preservation consults, I would say even less are having discussions about means to reduce the risk of cancer in their children if they have a known cancer inducing variant,” McKenzie said. 

Ovarian toxicity and ovarian function monitoring post-treatment is also very important, even if a patient does not elect to undergo fertility preservation, McKenzie said. 

“If the ovaries haven’t recovered—are [patients] being adequately counseled in terms of hormone therapy, if applicable, or cardiovascular risks, or bone health risks? It isn’t just the reproductive function that we pay attention to in the context of family-building, but also if you have a loss of ovarian function, or gonadal function in men, how that affects sexual health and other health sequela,” McKenzie said. 

McKenzie recommends that oncologists get a baseline fertility assessment for their patients even if they decline fertility preservation. This would include an anti-mullerian hormone and antral follicle count, both of which are used to assess ovarian reserve. 

The baseline assessment should also include menstrual history and information about contraception for women, and a baseline semen analysis for men. 

“If [the patient] is of unproven fertility, and they’ve never had a fertility evaluation, and then they go through treatment and have difficulty conceiving post-treatment, there’s always going to be that question of ‘was it treatment-related?’ Or perhaps they had fertility issues that were not identified even prior to treatment,” said McKenzie. 

There is also a misconception of how long egg harvesting takes, said McKenzie.

Once a patient starts fertility medications, they are typically only on the medications for eight to 12 days, with the eggs harvested 36 hours later. So, it can really be done quite quickly, and those medications can start any time in a patient’s menstrual cycle, she said.

“Regardless of whether a patient decides to undergo fertility preservation or not, just having that counseling is so important,” McKenzie said. “I haven’t had anybody come back with regret over the decision that they made as long as it was their decision, and as long as they were empowered to make the choice. Because you’re empowering them at a time when they often feel very unempowered in terms of their body and their overall health. So, I think the information is so important,” McKenzie said.

“Some patients do not have these discussions, unfortunately. But, we’re hoping it’s fewer and fewer.”

Was Ulloa one of those patients who just fell through the cracks? 

“I think from their perspective, maybe they were trying not to overwhelm us and help us focus on what’s most important, which at the end of the day is starting treatment, so that we can hopefully beat this type of rare and aggressive cancer,” said Ulloa.

“It’s just unfortunate that the collateral is that after you complete your journey, or after we’re kind of in a space to talk about, or think about that part of our lives—we’re not equipped.

“With cancer, our future is already so completely uncertain, and it’s just devastating when you come to find out that there’s more that you didn’t know about.”