Each year in the United States, approximately 90,000 adolescents and young adults (AYAs), defined as those between the ages of 15 and 39, are diagnosed with cancer, and about 9,300 die of the disease.¹ Worldwide, the number of new cases of cancer in this age population tops 1,300,200—an increase of an estimated 79% from 1990 to 2019²—with cancer-related deaths occurring in nearly 377,700 AYAs.³

Despite these alarming statistics in the rise of early-onset cancer incidence among AYAs, and their potentially devastating life-altering consequences on infertility, a recent study evaluating fertility preservation patterns finds that only half of patients of reproductive age at the time of their cancer diagnosis reported having a discussion about their fertility preservation options with their health-care provider. The study, conducted by Andreana N. Holowatyj, PhD, MSCI, Assistant Professor of Medicine and Cancer Biology at Vanderbilt University Medical Center, and her colleagues, surveyed 473 patients with a first primary early-onset cancer participating in the REACT (Reproductive Health After Cancer Diagnosis & Treatment) study (www.vumc.org/thereactstudy/home). The cross-sectional study included males, aged 18 to 49 at diagnosis, and females, aged 18 to 42 at diagnosis, who received a cancer diagnosis between 2013 and 2021.

Andreana N. Holowatyj, PhD, MSCI

The participants were asked to respond yes or no to the following question: Did a health-care professional involved in your cancer care talk with you about options to preserve your fertility, for example, sperm banking or freezing of eggs, embryos, or ovarian tissue, before you started cancer treatment?

Dr. Holowatyj’s findings showed that just one in every two patients (240 of 473 [50.7%]) reported that a provider involved in their cancer care discussed fertility preservation options before cancer treatment began.⁴ In addition, the proportion of these patient-reported discussions differed significantly by age, pregnancy history, marital status, and cancer type. For example, provider discussions about fertility preservation happened more often among those patients who were married, had previously been pregnant (for males, this was defined as a history of pregnancy with a partner), or were older at the time of their diagnosis. The lowest prevalence of these discussions was among those patients with thyroid (3.6%), lung or bronchial (21%), ovarian (21.4%), and colorectal (44.2%) cancers.⁴

Recommendations From ASCO’s Fertility Preservation Guideline

The results from this study are in stark contrast to the recommendations outlined in ASCO’s Fertility Preservation for Patients With Cancer Practice Guideline Update, issued in 2018.⁵ The guideline calls on all providers, including medical oncologists, radiation oncologists, gynecologic oncologists, urologists, hematologists, pediatric oncologists, and surgeons, to address the possibility of infertility with their young patients and to offer options and/or referrals to reproductive specialists for counseling as early as possible before cancer treatment begins. See “ASCO’s Recommendations for Initiating Fertility Preservation Conversations With Patients,” on page 30.

In a wide-ranging interview with The ASCO Post, Dr. Holowatyj discussed the results of her study, the barriers to provider-initiated fertility preservation counseling, and the potential impact abortion bans and restrictions may be having on providing fertility preservation care.

Addressing Infertility Risk With Patients

Given the steady rise in cancer incidence in adolescents and young adults, did you find it surprising that so few oncology providers are having fertility preservation conversations with their young patient? Why aren’t these discussions happening more frequently?

I found our study results concerning and alarming but, unfortunately, not that surprising. I believe they highlight a critical gap in our complete understanding of the burgeoning burden of early-onset cancers on AYAs, because historically cancer has been thought of as a disease of aging. We have made significant progress in providing comprehensive supportive care for older patients with cancer, but there remains a paucity of research in understanding the unique needs of our younger patients.

Why fertility counseling is not happening more frequently may be the result of a lack of provider familiarity with ASCO guidelines and/or limited time and resources. However, I’m encouraged that we have an opportunity to increase the ubiquity of these discussions by educating providers on the importance of having these critical and necessary conversations as soon as possible prior to the initiation of cancer therapy.

One consideration to acknowledge in our study is patient recall bias. It is possible patients may not have remembered or understood the discussion. However, many patients have repeatedly echoed the sentiment that you don’t forget a conversation during which you were told you may or may not be able to have children.

Providing Fertility Preservation Counseling for All Patients

It was surprising to see that those patients most often not consulted about fertility preservation were married, previously had been pregnant, and were older. Do you have a theory about why these patients were not told about their fertility preservation options?

There have been qualitative studies on clinicians’ perspectives on what may influence nonadherence to ASCO’s fertility preservation practice guidelines. Some of the challenges included unfamiliarity with infertility risk after a cancer diagnosis, a lack of resources for providing referrals, and clinicians’ perception of the importance of fertility preservation in females who already have children and maybe aren’t interested in expanding their family or are older, which may have contributed to our findings.

However, none of these characteristics should be a factor in whether a fertility preservation discussion takes place. All patients should be afforded this conversation, so they can make an informed decision with their care team about whether preservation procedures are right for them.

Understanding How Cancer Type Influences Fertility Preservation Counseling

Curiously, a patient’s cancer type also influenced whether fertility preservation was brought up by the oncology team. For example, a high percentage of young adults with testicular cancer, 96%, reported having a conversation with their health-care provider. In contrast, the lowest prevalence was reported by patients with thyroid, ovarian, lung or bronchus, and colorectal. Can you speculate as to why these cancers would or would not spark fertility preservation counseling?

This finding was intriguing to us as well. My lab is focused on research in early-onset colorectal cancer, and our discovery that only 44% of patients reported a discussion on fertility preservation options is worrisome.

This care gap prompted me to open the PREFACE (Preserving Fertility After Colorectal Cancer; ClinicalTrials.gov identifier NCT05239338) study (www.vumc.org/holowatyj-lab/preface-study). This study is investigating the physiologic and psychosocial effects of early-onset colorectal cancer on fertility, as well as sexual health.

Guest Editor

Brandon Hayes-Lattin, MD, FACP

Dr. Hayes-Lattin is Professor of Medicine and Deputy Division Head of the Adolescent and Young Adult Oncology Program at the Knight Cancer Institute at Oregon Health and Science University, Portland.

The low percentage of patients with ovarian cancer who received fertility preservation counseling as opposed to the high percentage of patients with testicular cancer who did is surprising as well, since both of these are cancers of the reproductive organs. One speculation with ovarian cancer is that perhaps these patients were diagnosed at a later stage, when fertility-sparing surgery may have compromised their outcome.

I can’t speculate as to why so few conversations took place for patients diagnosed with lung/bronchial or thyroid cancers, which all points to the need for more research in this area.

Making Fertility Preservation a Priority for Patients Everywhere

Your study was conducted before Roe v Wade was overturned, in 2022, by the Supreme Court. Do you know what impact abortion bans and restrictions in many states may be having on fertility preservation discussions, since some options include the freezing of eggs and embryos?

Although the clinical implications of overturning Roe v Wade continue to evolve, limiting the access to assisted reproductive technologies, such as in vitro fertilization, may detrimentally impact whether discussions on fertility preservation options take place.

However, regardless of where patients live, fertility preservation counseling should still be part of routine cancer care, even though implementation of some options may not be possible. These discussions provide an opportunity to empower patients to make autonomous, informed decisions about their reproductive health while they cope with their diagnosis and treatment plan.

Overcoming Barriers to Providing Fertility Preservation Counseling

What are some other barriers to initiating fertility preservation discussions, such as a lack of provider time; concern about delaying cancer treatment; and cost of these procedures, which are usually not covered by insurance.

Reproductive care is part of the standard of care for patients with cancer. ASCO guidelines also call for the initiation of the discussion on the potential of infertility as soon as possible after a cancer diagnosis, so patients are aware of all the options before treatment begins.⁵

It is important for all providers involved in cancer care, including nurse practitioners and physician assistants, to be prepared to discuss fertility and sexual health with their reproductive-age patients. What’s critical is finding a routine, systematic way of integrating this important conversation into the clinical setting.

The cost of pursuing fertility preservation for patients is substantial—estimated to range between $10,000 and $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 or both males and females.⁶ And although health insurers typically do not cover fertility preservation, a handful of states, including California, Colorado, Connecticut, Delaware, Illinois, Maryland, New Hampshire, New Jersey, New York, and Rhode Island, have passed fertility preservation coverage laws. There are also organizations, including the charity Worth the Wait: Fertility & Adoption Grants for Cancer Survivors (https://worththewaitcharity.com), which provide financial support and educational resources for fertility treatments, adoption, and surrogacy.

Concerns that the time required for patients to undergo preservation procedures might result in treatment delays and contribute to poor cancer outcomes is appreciably another patient-level and physician-level barrier to this high-quality cancer care. Saving a patient’s life is, of course, the number-one priority, and that’s what providers—and patients—rightly focus on.

Unfortunately, we were not able to evaluate stage of cancer at diagnosis or patients’ reproductive potential in our study, so I don’t know how these factors may have contributed to our results. 

DISCLOSURE: Dr. Holowatyj receives research grants from the National Institutes of Health, American Cancer Society, Appendix Cancer PMP Research Foundation, Dalton Family Foundation, and Pfizer; and consulting fees from MJH Life Sciences and Bayer AG.

REFERENCES

1. American Cancer Society: Special Section: Cancer in Adolescents and Young Adults. Available at www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2020/special-section-cancer-in-adolescents-and-young-adults-2020.pdf. Accessed February 4, 2025.

2. Zhao J, Xu L, Sun J, et al: Global trends in incidence, death, burden and risk factors of early-onset cancer from 1990 to 2019. BMJ Oncol 2:e000049, 2023.

3. Hughes T, Harper A, Gupta S, et al: The current and future global burden of cancer among adolescents and young adults: A population-based study. Lancet Oncol 25:1614-1624, 2024.

4. Keller SR, Rosen A, Lewis MA, et al: Patient-reported discussions on fertility preservation before early-onset cancer treatment. JAMA Netw Open 7:e2444540, 2024.

5. Oktay K, Harvey BE, Partridge AH, et al: Fertility preservation in patients with cancer: ASCO clinical practice guideline update. J Clin Oncol 36:1994-2001, 2018.

6. Dorfman CS, Stalls JM, Mills C, et al: Addressing barriers to fertility preservation for cancer patients: The role of oncofertility patient navigation. J Oncol Navig Surviv 12:332-348, 2021.

ASCO’s Recommendations for Initiating Fertility Preservation Conversations With Patients

ASCO first published evidence-based clinical practice guidelines on fertility preservation in 2006 and updated the guidelines in 2013 and again in 2018.¹ The goal of the update is to provide oncologists, including medical oncologists, radiation oncologists, gynecologic oncologists, urologists, hematologists, pediatric oncologists, and surgeons; other health-care providers; and caregivers with recommendations for preserving fertility in adults, adolescents, and children with cancer who are at risk for infertility due to cancer treatment.

Here is a brief summary of those recommendations. The complete list of recommendations, including a description of the various fertility preservation methods, may be found at www.asco.org/survivorship-guidelines.

• Health-care providers caring for adult and pediatric patients with cancer should address the possibility of infertility as early as possible before cancer treatment begins. The discussion should take place as soon as possible following a cancer diagnosis and can occur simultaneously with staging and the formulation of a treatment plan. This discussion can ultimately reduce distress and improve patients’ quality of life.

• Another discussion and/or referral may be necessary when the patient returns for a follow-up visit after completion of therapy and/or if pregnancy is being considered. The discussion should be documented in the patient’s medical record.

• Health-care providers should refer patients who express an interest in fertility preservation (and those who are ambivalent) to reproductive specialists.

• Patients should be referred to psychosocial providers when they are distressed about potential infertility risk.

• Health-care providers should suggest established methods of fertility preservation, such as semen or oocyte cryopreservation for postpubertal children, with patient assent and parent or guardian consent. For prepubertal children, the only fertility preservation options include ovarian and testicular cryopreservation.

REFERENCE

1. Oktay K, Harvey BE, Partridge AH, et al: Fertility preservation in patients with cancer: ASCO clinical practice guideline update. J Clin Oncol 36:1994-2001, 2018.