“You didn’t want children, did you?”

Crystal Brown Tatum of Dallas, Texas, told Healthline her oncologist casually asked that question halfway through her breast cancer treatment.

Until then, no one had mentioned fertility issues.

For young women with breast cancer, decisions affecting health and fertility must be made quickly, before treatment starts.

Certain treatments, such as tamoxifen, help lower the chance of disease recurrence. They can also interfere with fertility or trigger early menopause.

To preserve fertility, some young women are skipping part of their breast cancer treatment.

Dr. Jacqueline S. Jeruss, Ph.D. of the University of Michigan School of Medicine, and her colleagues explored the issue. Their study is published in the Journal of the National Cancer Institute.

The research involved 515 premenopausal women under age 45. Tamoxifen had been recommended for all of them.

Learn More: Chemotherapy and Fertility »

What the Research Showed

Women who had ductal carcinoma in situ, skipped radiation therapy, didn’t have chemotherapy, had a history of smoking, or had fertility concerns were less likely to start and more likely to stop tamoxifen treatment early.

Sixty-nine study participants either delayed or didn’t start tamoxifen treatment. Eighty stopped taking it early.

The main reasons were worry about side effects and fertility.

The researchers wrote, “Despite the importance of fertility to young breast cancer patients, availability of fertility preservation options, and relative safety of pregnancy among breast cancer survivors, fertility preservation is often underutilized and under-discussed in clinical settings.”

Jeruss told Healthline many women felt they were not adequately informed about fertility options. She hopes that by identifying this “at risk” population, doctors may become more responsive to these patient issues.

The researchers are gathering information about fertility outcomes and breast cancer recurrence for a five-year follow-up.

Jeruss said oncologists and OB-GYNs need to work together, but it may take a dedicated effort from medical specialists and patient navigators to ensure systems are in place so that patients receive optimal care.

“Young patients with cancer should feel confident about advocating for their care in the present, as well as looking forward to a healthy future that includes the possibility of reaching important survivorship goals,” said Jeruss.

Breast Cancer and Chemotherapy: Fertility and Sexual Side Effects »

Making the Hard Choices

Crystal Silins of Norfolk, Virginia, was 29 and trying to start a family when she learned she had breast cancer. Her doctor did discuss fertility with her.

She had the option of preserving some eggs before starting treatment. But her insurance wouldn’t cover it and time was of the essence.

“Everything was working against me,” she told Healthline.

Silins said she and her husband worked through a lot of emotional stress. They’ve since adopted a baby.

Silins has been taking tamoxifen for almost two years. To raise her chances of conceiving, she’s considering stopping next year with guidance from her oncologist.

She also plans to undergo fertility testing.

“Reliving all those disappointing emotions from diagnosis will be hard, but I feel like I need to know for our future plan,” she said.

Learn More: What Are the Decisions Around Pregnancy and Chemotherapy? »

Why Communication Is So Crucial

Mary Morison of Wall, New Jersey, was 32 when she found out she had breast cancer.

She wishes she knew then there was a good chance she wouldn’t be able to conceive after treatment or that it would be such an emotionally devastating experience.

Morison stopped taking tamoxifen earlier than the five-year recommendation.

“It’s hard to say that I should have or would have done something differently that would possibly compromise my health,” she told Healthline.

Today, she’s happy and healthy but still on what she calls the “fertility roller coaster.”

Kitt Allan of Jersey City, New Jersey, was 45 when she was told she had breast cancer. She was also pregnant.

During treatment, she learned about Hope for Two… The Pregnant with Cancer Network. The organization offers free support for women diagnosed with cancer while pregnant.

Allan is now the healthy mom of a 4-year-old boy.

She provides peer counseling for other women going through the same thing.

“It may sound strange,” she told Healthline, “but I get support from them as well as give it. There are some things I talk about with them that I don’t think anyone else I know completely gets.”

Jamie Pleva-Nickerson of Danbury, Connecticut, was 29 when she learned she had breast cancer. She lost her sister to the same disease three months later.

A call from the Young Survival Coalition prompted her to talk to her doctor and fertility specialists. She has since married and given birth to twin girls.

All the women who spoke with Healthline stress the importance of asking questions.

“But also be prepared for things not working out exactly as planned,” Silins said.

According to the Young Survival Coalition, resources like their Newly Diagnosed Navigator and LIVESTRONG’s Fertility Resource Guide can help young women make informed decisions. Talking with other young women affected by breast cancer who are further in their journeys and who may have made fertility preservation decisions can also be helpful. The Young Survival Coalition offers several ways for young women to connect, including online forums, a match with survivors through the SurvivorLink program, or in person at local Face 2 Face networking groups.