Life often presents us with unexpected twists and turns, and for those diagnosed with gynecologic cancer at a young age, the journey can be particularly challenging. One gynecologic cancer survivor candidly described the moment she learned about her diagnosis as “one of the most jarring, startling, and ungrounding things that’s ever happened to [her].” Although she recalled briefly discussing fertility preservation options with her oncologist before beginning treatment, her response when asked about the barriers she faced in accessing these crucial services was, “There wasn’t a lot of time to do that and consider what it would mean to, you know, save an egg. Or why you would want to do it. Or whether that would be a thing you were glad you did later. I really didn’t get to think about all of that.” Sadly, she found herself in premature menopause before she was ready, leaving her to grapple with the painful reality of infertility before she was ready.

While it can be emotionally challenging for all who receive a gynecologic cancer diagnosis, premenopausal women of childbearing age face an added array of difficulties. A study investigating the emotional experience of premenopausal patients diagnosed with gynecologic cancer found that the most common feelings were lack of control, shock, confusion, overwhelm, and fear. At a stage in life when survival instincts are at their peak, these women must also grapple with the substantial emotional burden of potentially losing the option to have children in the future. 

Given that many gynecologic cancer treatments involve chemotherapy, surgery, and/or radiation targeted at the reproductive organs, the period immediately following a gynecologic cancer diagnosis, before treatment begins, is critical for making informed decisions about fertility preservation. There are many ways to preserve fertility, including fertility sparing surgery (such as removing only one ovary instead of both) and retrieving and freezing eggs, embryos, or ovarian tissue for future use. However, these approaches are not always successful and can often lead to delays in starting treatment. Moreover, patients frequently encounter numerous obstacles when seeking the necessary care and information to make these weighty decisions.

The aforementioned study also sought to uncover the barriers faced by this patient group when accessing fertility preservation care. The study identified several common obstacles, primarily rooted in logistical challenges. These challenges encompassed issues such as lack of time, cancer treatment prioritization, and financial constraints. Additionally, difficulties arose in accessing information, often due to inadequate counseling and lack of communication and support from providers.

Time and financial limitations are two significant factors why so many experience fertility preservation regret after finishing treatment. Understandably, oncologists prioritize early cancer treatment to maximize success. However, this urgency often leaves patients with limited opportunities to make informed fertility preservation decisions, preventing many from aligning decisions with long-term family goals. Unfortunately, even when individuals are well-informed about fertility preservation options, the high costs are often prohibitive. For instance, one patient diagnosed in her late 20’s had expressed that her family goals were not completed at the time of diagnosis. Though her oncologist discussed fertility preservation options before she started treatment, she was unable to pursue them due to a lack of insurance coverage. This issue becomes even more challenging for those already grappling with substantial medical bills, rendering fertility preservation out of reach for many.

When faced with a cancer diagnosis, life can feel like it has been turned completely upside down. During such challenging times, it’s important that the responsibility to seek out information and advocate for fertility preservation doesn’t fall solely on the patient. Unfortunately, the study revealed that inadequate counseling and lack of communication and support from providers proved to be among the most significant barriers to accessing fertility preservation care. One survivor expressed that she “felt really disappointed and frustrated that [she] wasn’t given all of the information that could have been far more helpful.” While most patients recognize that their oncologists prioritize cancer treatment, they still need the space to learn about and process their fertility preservation options through proper counseling.

Receiving a gynecologic cancer diagnosis is an emotionally charged experience, and for patients whose families are not yet complete, the added concern of fertility preservation can weigh heavily on their minds. It’s crucial for individuals who have encountered these barriers and have experienced difficulties navigating their options to know they are not alone in their journey. Within both the community and the medical field, there are dedicated advocates who are eager to offer guidance and support, ensuring that no one faces these challenges alone.

Ways we can increase access and awareness:

• Connect patients with others to share experiences through support groups, such as the Coalition’s Young Survivor Gatherings and PALS Mentor Program.
• Advocate for fertility preservation care to be covered by insurance.
• Raise money to help cover financial cost for individuals looking to undergo fertility preservation methods who need help.
• Encourage gynecologic oncologists to engage in reflective conversations with patients regarding fertility preservation options.
• Create more streamlined referrals for oncologists to connect patients with resources to fertility specialists, therapists, and social workers.
• Increase funding for research on the patient experience and quality of life so that providers can change the standard practice in providing resources for patients through evidence-based practice.

*Source: www.ncbi.nlm.nih.gov/pmc/articles/PMC10502349/