Serving Survivors, Preserving Legacies

National Young Adult Cancer Awareness Week is an annual, community-driven opportunity to highlight the needs, issues and challenges of young adults diagnosed with cancer between the ages of 15–39 and to spread the word about the amazing work being done by patient advocates and healthcare champions on their behalf. This blog series serves to raise the profile of the issues and make it as easy as possible for supporters to add their voices to the Critical Mass community.

By Emily Eargle, MSW, Director of Navigation Services at the LIVESTRONG Foundation

Sarah was 25 years-old when she was diagnosed with breast cancer. At the time no one discussed how treatment might affect her fertility or presented her with options for fertility preservation. She was unmarried and the thought of having children was far from her mind. She just wanted to get past treatment and move on with her life, which she did.

Five years later, Sarah was married with a newly purchased home. She was two months shy of finishing a five-year course of tamoxifen, a drug used to combat estrogen-driven breast cancer. She and her husband were getting excited at the prospect of finally starting a family of their own, when Sarah found a new lump. It was cancerous and estrogen-driven, which meant her oncologist would likely recommend the removal of her ovaries. The hope of having children suddenly started to diminish for Sarah and her husband.

Sarah’s story is more common than we would hope, with over 150,000 people in the U.S. diagnosed in their reproductive years (under the age of 45). Cancer treatments have advanced over the years but they still come with significant side effects, one of which could be infertility due to the toxicity of treatment, surgery that impacts the reproductive system or the nature of the cancer itself. On the flip side, advances in reproductive technologies offer many new options for fertility preservation prior to treatment, fertility sparing interventions during treatment and assistive reproductive technologies after treatment for those who don’t regain their fertility after treatment. However, too many people have finished treatment and find out after the fact that it could have impacted their fertility, causing additional emotional distress.

Recent research has shown some significant things: 1) many young adults will make treatment decisions based on the impact on fertility, including delaying treatment; 2) provider rates of disclosure of risk and referral to fertility specialists continue to be very low despite clear guidelines.

The study found that of the 231 patient records examined from four different cancer centers, 26% had documented discussions of fertility risk, 24% had documented discussions of fertility preservation, and 13% had documented referral to a fertility specialist.​

Cancer survivorship is more than just managing the disease. It is about supporting the whole person and respecting their decision-making rights and values that impact their quality of life, like family building. For young adults affected by cancer, thinking about fertility can be very confusing. Questions that can compound confusion include:

• What do I do if I don’t know if I want to have a family?
• Do I have options if I am single and don’t know if I will ever have a committed partner?
• How much does preservation cost? How can I manage the costs of cancer treatment, my school loans, and fertility preservation?

Having a cancer diagnosis can feel isolating. Having to wrestle with these questions when no one else you know is thinking about kids can be even more so. This is why it is important for diagnostic and treating institutions to have systematic approaches to disclosing the risks of infertility and providing supportive care and referral strategies to help patients make informed decisions from the moment a person finds out they have cancer.

There are also non-profit and community organizations that can support survivors and institutions by providing information, counseling and practical resources on the topic of cancer and fertility. LIVESTRONG Fertility aims to educate survivors and health care professionals on this topic, provide decision making support to survivors and increase access to fertility preservation and family building resources through discount partnerships and resource guides.

Sarah was connected to LIVESTRONG Fertility to receive financially discounted fertility preservation services. She and her husband welcomed a baby girl into the world in April of 2011.

Originally published at criticalmass.org on April 9, 2015.