Fertility challenges a burden for adolescents and young adults with cancer: new report

TORONTO — The Canadian Partnership Against Cancer (the Partnership) has released a report on Canadian adolescents and young adults (AYAs) – aged 15 to 39 – living with cancer. The report identified fertility as a primary concern for men and women in this group, and that the emotional and financial impact of the inability to become biological parents, as a result of cancer treatment, can be devastating to individuals and their families.

“Loss of fertility as a complication of cancer therapy is important, specifically to adolescents and young adults. Many who survive cancer but find themselves infertile, experience damage to their aspirations and identity, made all the worse if they feel that they weren’t made aware of the risks of infertility nor of opportunities to preserve fertility prior to cancer therapy,” said Dr. Paul Grundy, Expert Lead of Pediatric, AYA Oncology at the Partnership. “This whole issue dubbed ‘oncofertility,’ has generally not been given appropriate attention by our healthcare system, perhaps in the face of the more life-threatening diagnosis of cancer, but survivors tell us that these long-term challenges are very important.”

Adolescents and Young Adults with Cancer: A System Performance Report provides data on the burden fertility clinics would experience if all AYAs with cancer were referred for fertility counselling, and includes insights from AYA cancer patients on fertility concerns following a cancer diagnosis. During treatment for cancer, patients receive therapies that are toxic to the ovaries and testes, and can lead to problems with fertility.^[1] This is significant for young patients who are all within the reproductive age range.

“The cancer diagnosis was easier to accept than I could have hoped. My reality was that I had the disease and I felt lucky to have treatment options, but the pain I felt when hearing that treatment would leave me infertile is impossible to describe,” said Bronwen Garand-Sheridan, cancer survivor. “What was worse was the lack of psychological support provided after receiving this news. Our health system must do a better job of preparing the cancer patient for the news of infertility.”

For young women with cancer, procedures such as egg harvesting are intensive procedures to perform in a potentially unwell patients. Egg harvesting can take upwards of two weeks and may delay the start of treatment. It also comes with a significant financial burden averaging more than $10,000.

Key opportunities and challenges outlined in the report include:

• Interviews with AYAs diagnosed with cancer identified fertility as a major source of distress prior to treatment.
• Fertility preservation is an option for young people with cancer and concerned about their reproductive health, but it is affected by the limited number of specialized in-vitro fertilization (IVF) clinics in Canada.
• It is estimated that if all women aged 15-39, with cancer, in Canada were referred for fertility consultations (e.g., to discuss egg harvesting), fertility clinics could see an increase from 103 patients per clinic per year in Ontario to 230 in Alberta, with all other provinces falling within this range. This would be a burden for clinics which treat all women (including those without cancer).
• Data are not available in Canada on how well informed young men and women with cancer are on fertility issues, and on how many are referred to (or actually see) a fertility specialist. These are areas to be explored in future reports.

“Most fertility clinics get very few referrals for AYAs with cancer, suggesting that the majority are not being referred for counselling,” said Dr. Anne Katz, Sexuality Counselor at CancerCare Manitoba. “We need to identify gaps in care and steps to be taken to ensure equitable access to fertility preservation counselling and services for young men and women with cancer across the country.”

In addition to oncofertility, Adolescents and Young Adults with Cancer provides information on incidence rates and trends, and distribution of cancer types among AYAs in Canada. It also includes other unique aspects of the AYA cancer journey including: mental health and psychosocial needs; medical needs during diagnosis, treatment, and survivorship; impact of cancer on employment and professional development; and challenges with AYA involvement in research and clinical trials.

“We are pleased to see this type of research being done looking at the cancer experience of adolescents and young adults in Canada, particularly in the area of oncofertility,” said Britt Andersen, Executive Director of the Terry Fox Foundation. “The better we can understand the mental and emotional trauma experienced by this group during their cancer journey, the better we can improve outcomes for these cancer survivors who have many years ahead of them.”

A full copy of the report is available at www.systemperformance.ca.

Data on oncofertility was obtained from the Childhood and Adolescent Young Adult Cancer Survivors Research Program (CAYACS), BC Cancer Agency, Cancer Care Manitoba, Pediatric Oncology Group of Ontario (POGO)’s database POGOnis, IWK Health Centre and Janeway Children’s Health and Rehabilitation Centre.

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For more information or to arrange interviews, please contact:

Nick Williams
Communications Officer, Media Relations
Canadian Partnership Against Cancer
(416) 915-9222, x5799 (office)
(647) 388-9647 (mobile)

About AYAs with cancer in Canada

Over 7,000 Canadians aged 15-39 are diagnosed with cancer every year.^[2] The underlying biology of specific cancers changes during the AYA years, so risk factors, genetic makeup and clinical behaviour are closely linked to age at diagnosis.^[3] For many AYA cancers, this translates to a more advanced stage at presentation, more aggressive histological or genetic subtypes and poorer outcomes. Adolescence and young adulthood is a period of key developmental milestones that are fundamental to a person’s overall well-being for the rest of their life. These milestones include the development of values and personal identity, formation of strong personal relationships and attaining financial independence.^[4,5] Cancer means additional challenges during this period of development.^[6-11]

About the Canadian Partnership Against Cancer

The Canadian Partnership Against Cancer works with Canada’s cancer community to reduce the burden of cancer on Canadians. Grounded in and informed by the experiences of those affected by cancer, the organization works with partners to support multi-jurisdictional uptake of evidence that will help to optimize cancer control planning and drive improvements in quality of practice across Canada. Through sustained effort and a focus on the cancer continuum, the organization supports the work of the collective cancer community in achieving long-term population outcomes: reduced incidence of cancer, less likelihood of Canadians dying from cancer, and an enhanced quality of life of those affected by cancer. For more information, visit partnershipagainstcancer.ca

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Notes

¹ Ronn R, Holzer HEG. Oncofertility in Canada: the impact of cancer on fertility. Current Oncology. 2013 Aug;20(4):E338-E44.

² Statistics Canada. New cases of primary cancer (based on the August 2015 CCR tabulation file), by cancer type, age group and sex, Canada, provinces and territories [Internet]. Ottawa (ON): Statistics Canada; 2015 [updated 2016 Mar 14; cited 2017 Jan 19]. Available from: http://www5.statcan.gc.ca/cansim/a26?lang=eng&id=1030550

³ Tricoli JV, Blair DG, Anders CK, Bleyer A, Boardman LA, Khan J, et al. Biologic and clinical characteristics of adolescent and young adult cancers: acute lymphoblastic leukemia, colorectal cancer, breast cancer, melanoma, and sarcoma. Cancer. 2016 Apr 1;122(7):1017-28.

⁴ Arnett JJ. Emerging adulthood: a theory of development from the late teens through the twenties. Am Psychol. 2000;55(5):469.

⁵ Fernandez C, Fraser GAM, Freeman C, Grunfeld E, Gupta A, Mery LS, et al. Principles and recommendations for the provision of healthcare in Canada to adolescent and young adult-aged cancer patients and survivors. J Adolesc Young Adult Oncol. 2011 Mar;1(1):53-9.

⁶ Zebrack B, Mathews-Bradshaw B, Siegel S. Quality cancer care for adolescents and young adults: a position statement. J Clin Oncol. 2010 Nov 10;28(32):4862-7.

⁷ Nass SJ, Beaupin LK, Demark-Wahnefried W, Fasciano K, Ganz PA, Hayes-Lattin B, et al. Identifying and addressing the needs of adolescents and young adults with cancer: summary of an Institute of Medicine workshop. Oncologist. 2015 Feb;20(2):186-95.

⁸ Zebrack BJ, Mills J, Weitzman TS. Health and supportive care needs of young adult cancer patients and survivors. J Cancer Surviv. 2007 Jun;1(2):137-45.

⁹ Zebrack BJ. Psychological, social, and behavioral issues for young adults with cancer. Cancer. 2011;117(S10):2289-94.

¹⁰ Warner EL, Kent EE, Trevino KM, Parsons HM, Zebrack BJ, Kirchhoff AC. Social well-being among adolescents and young adults with cancer: a systematic review. Cancer. 2016;122(7):1029-37.

¹¹ Bellizzi KM, Smith A, Schmidt S, Keegan TH, Zebrack B, Lynch CF, et al. Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult. Cancer. 2012;118(20):5155-62.