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Adolescent and Young Adult Oncology explores the unique physical, psychosocial, social, emotional, sexual, and financial challenges adolescents and young adults with cancer face. The column is guest edited by Brandon Hayes-Lattin, MD, FACP, Professor of Medicine and Medical Director of the Adolescent and Young Adult Oncology Program at the Knight Cancer Institute at Oregon Health and Science University in Portland, Oregon.
Studies consistently show that fertility preservation is of paramount importance to the nearly 70,000 adolescent and young adults (AYAs) diagnosed with cancer each year.1 Most of these patients, however, do not have their fertility concerns adequately addressed during discussions with their oncologists about their treatment options, or receive referrals to a reproductive endocrinologist.2 The reasons are many, including lack of referral resources to a reproductive specialist, urgency to start treatment, high out-of-pocket costs to patients, and uncertainty about how to approach the subject with patients with a poor prognosis.
A survey by LIVESTRONG found that only about one-quarter of AYAs actively pursued ways to preserve their fertility before beginning treatment.3 To meet the needs of the nearly 80% of cancer survivors at risk for treatment-related infertility4 and increase the number of AYA survivors seeking fertility preservation options, in 2013, ASCO updated its clinical practice guideline for fertility preservation for patients with cancer.5 The guideline recommends that oncologists discuss the possibility of infertility with their patients treated with chemotherapy, surgery, or radiation therapy as well as provide fertility preservation options and/or referrals to appropriate reproductive specialists early in the treatment process. The guideline also calls for oncologists to document the discussion in the patient’s medical record—something few oncologists do, according to a study by Gwendolyn P. Quinn, PhD, and colleagues.6
In Dr. Quinn’s study, the researchers reviewed the records of AYAs diagnosed with one of the four most common cancers in that age group: breast, leukemia/lymphoma, sarcoma, and testicular cancer. Of the 231 medical records examined, they found just 26% contained documented infertility risk discussion; 24% documented fertility preservation option discussions; and 13% documented referral to a fertility specialist. In addition, the medical records were less likely to contain evidence of fertility risk and fertility preservation option discussions for female patients and those with breast cancer and for Hispanic/Latino patients.
Fertility Preservation Options
The relatively new interdisciplinary field of oncofertility, the melding of oncology and assisted reproduction to balance life-preserving treatments with fertility-preserving options for children and young adults with cancer, recognizes the gaps in fertility care for AYAs and aims to expand fertility options for young survivors. Currently, there are several standard methods for preserving fertility in young women, such as embryo cryopreservation and oocyte (egg) cryopreservation and sperm banking in men. Other options include gonadal and ovarian shielding during radiation therapy to reduce reproductive organ exposure to radiation and ovarian transposition (oophoropexy), in which the ovaries are repositioned away from the radiation field before radiation treatment begins. Experimental procedures being studied include testicular and ovarian tissue cryopreservation.
The ASCO Post talked with Dr. Quinn, Senior Member in the Health Outcomes and Behavior Program at Moffitt Cancer Center and Professor in the Department of Oncologic Sciences at Morsani College of Medicine at the University of South Florida, about the results of her study; how to improve the rates of fertility preservation discussions; and when oncologists should initiate the conversation of cancer-related fertility risk with their AYA patients.
Let’s Talk About It
Your research found disappointingly low rates of documented infertility risk discussions. Why are so few of these discussions happening, especially among young Hispanic/Latino patients?
There have been limited interventions to improve either the rate of fertility preservation discussions or documentation of these discussions, although some do exist in the form of pop-up or fly-in reminders in medical records. We also need to train oncology health-care providers to do this documentation; not only does it protect clinicians from legal jeopardy for not talking to patients about this issue, it also provides information to the next physician about the care a patient received as he or she transitions to survivorship and returns to the primary care setting.Error loading Partial View script (file: ~/Views/MacroPartials/TAP Article Portrait and Quote.cshtml)
The reason these discussions are documented less among minority AYA patients is because fertility risk is discussed less often among minority patients. And there are several reasons for this, including the added complication of bringing in a translator to explain the issue to a Spanish-speaking family, who may not be familiar with the concept of fertility preservation. Also, minority patients are more likely to have low income and be less able to afford the cost of fertility preservation, which in most cases is not covered by health insurance.
Despite these barriers, we encourage health-care providers to have these discussions with all their patients. Even if cost is an issue, there are resources available to help patients cover the expense, such as the Alliance for Fertility Preservation (allianceforfertilitypreservation.org/costs/financial-assistance). (See “Fertility Preservation Resources for AYAs With Cancer”.)
How can physicians increase their rate of fertility preservation discussions?
At our center, we have questions embedded in each patient’s intake questionnaire that ask about fertility issues, such as: Do you have all the children you wish to have; and Would you like a referral to an infertility specialist? And the answers can be a conversation starter about fertility preservation.
Newly diagnosed patients often have no idea why they are being asked these questions, so it falls to the medical institution and the clinical care team to explain the fertility risks with a particular cancer treatment. Physicians may not have been trained in these types of discussions, so the task usually falls to nurses, advanced care practitioners, and social workers.
Having questions about fertility status become a routine part of patients’ medical records will provide information to the oncologist and other members of the care team. They also act as a reminder to discuss fertility options.
Closing the Gender Gap
Studies show that male AYAs are four to five times more likely than female AYAs to take steps to preserve their fertility after a cancer diagnosis.7 Why is there such a gender difference in fertility preservation?
The main reason is fertility preservation therapy for young men is less expensive and less invasive than it is for young women. For example, costs for sperm banking range between $1,000 and $1,500, and annual storage costs can be between $200 and $400. Conversely, embryo preservation can cost over $12,000 per in vitro fertilization cycle, not including implantation fees and storage costs, which can run about $300 annually.8
We have a program at our center to help cover some of the costs of sperm banking, and organizations such as LIVESTRONG (livestrong.org) provide financial assistance for fertility treatment, but cost is a big issue for young patients. For instance, we launched a retrospective study of AYA patients referred to a reproductive endocrinologist for a consultation. We found the majority of females didn’t pursue their fertility preservation options because they couldn’t afford the consultation fee and the cost of therapy.
Discussing Cancer-Related Infertility Risk
What is the optimal time for oncologists to raise the issue of infertility with their patients?
Ideally, it is when the treatment plan is being discussed. There are some patients who are perhaps having surgery alone, and surgeons will often say, “It’s not my job to have a discussion about fertility preservation because the treatment won’t impact fertility.” But even in those situations, we encourage surgeons to discuss these issues with patients. You never know what might happen in the future in terms of a cancer recurrence or the development of a new cancer that might impact fertility.
In defense of oncologists, it is challenging to wrap in a discussion about fertility risk after talking about cancer treatment options with a newly diagnosed patient. I have witnessed a physician explaining fertility risks to a patient in the context of a new cancer diagnosis and then later interviewing the patient about what she recalled about the conversation; she said no one had discussed the issue with her.
We know that when patients hear the word “cancer,” they often don’t hear anything else. So it’s important to have educational materials on fertility risk from treatment and resources for fertility preservation on hand to give to patients and to have follow-up conversations with patients about what their understanding is of their fertility risks and their options to preserve fertility.
My motto is, regardless of what a patient decides, to preserve or not preserve fertility, I want to know I gave the patient all the information he or she needed to make the best decision for his or her future and quality of life. ■
DISCLOSURE: Dr. Quinn reported no conflicts of interest.
1. National Cancer Institute: Planning for the future—How NCI gives cancer survivors hope for a family. Available from www.cancer.gov/research/progress/discovery/fertility. Accessed June 19, 2017.
2. Benedict C, Thom B, Kelvin JF: Fertility preservation and cancer: Challenges for adolescent and young adult patients. Curr Opin Support Palliat Care 10:87-94, 2016.
4. Linkeviciute A, Boniolo G, Chiavari L, et al: Fertility preservation in cancer patients: The global framework. Cancer Treat Rev 40:1019-1027, 2014.
5. Loren AW, Mangu PB, Beck LN, et al: Fertility preservation for patients with cancer: American Society of Clinical Oncology clinical practice guideline update. J Clin Oncol 31:2500-2510, 2013.
6. Quinn GP, Block RG, Clayman ML, et al: If you did not document it, it did not happen: Rates of documentation of discussion of infertility risk in adolescent and young adult oncology patients’ medical records. J Oncol Pract 11:137-144, 2015.
7. Shnorhavorian M, Harlan LC, Smith AW, et al: Fertility preservation knowledge, counseling, and actions among adolescent and young adult patients with cancer: A population-based study. Cancer 121:3499-3506, 2015.
8. Nass SJ, Beaupin LK, Demark-Wahnefried W, et al: Identifying and addressing the needs of adolescents and young adults with cancer: Summary of an Institute of Medicine workshop. Oncologist 20:186-195, 2015.
The websites listed here provide educational resources for adolescents and young adults (AYAs) with cancer and health-care providers on cancer-related fertility risks and treatment options, as well as financial assistance programs for fertility preservation services.