Young fertile women get breast cancer. Young women who haven’t built their families yet get breast cancer. Women who dream of being mothers get breast cancer. Fertility and breast cancer is an under-addressed topic in the breast cancer world. So what’s the lowdown on pregnancy after breast cancer? Is it possible? Is there a way to preserve fertility during breast cancer treatments? To address this topic, we’ve invited Marie Ennis-O’Connor from Journeying Beyond Breast Cancer  who has personally battled post-cancer infertility. She shares what she wishes she would have known when she was first diagnosed with breast cancer.

More young women are getting breast cancer. Breast cancer may be still primarily a disease of older women–only approximately 25% of cases occur in women younger than 50 years. That said, the absolute number of younger women diagnosed with breast cancer has steadily grown in recent years.

The good news is that in the last decade the mortality rate from breast cancer has steadily declined. Moreover, the greatest gains have been among younger women. However, although younger women are surviving longer, studies suggest that quality of life after breast cancer is also more evasive for younger women.

Why the fertility conversations needs to happen early

Quality of Life (QoL) is a person’s sense of well-being. It stems from satisfaction or dissatisfaction with aspects of life that are important to him/her. For many young women with breast cancer, the ability to have children is a key point in their quality of life after treatment. The use of chemotherapy and endocrine therapies in premenopausal women impacts fertility. It’s something that young women need to know about. Interventions to preserve fertility generally need to occur before chemotherapy.

Sadly, many women do not receive information about these options in a timely fashion.

I know this from personal experience. In my early thirties I was diagnosed with breast cancer, but my medical team never gave me any  fertility-related information. I only found out about it on the Internet late one night after I had already started chemotherapy. It was extremely distressing to find out this way. It’s a conversation that I should have had with my oncologist before I started treatment.

If I had known then what I know now about the impact of breast cancer on my future fertility, I would have made different choices at the time.

Today I share my story in the hope that if you are reading this as a young woman who has just received a diagnosis of breast cancer, you will know there are things you can do to retain your fertility.

Educating young survivors is mandatory

Back in 2004, the year in which I was diagnosed, a group of researchers surveyed 657 members of the Young Survival Coalition (YSC), on their attitudes about fertility. 57% of patients reported being very concerned about becoming infertile, regardless of their age or stage of disease. 29% said concern about infertility influenced their decisions about treatment. The researchers highlighted the need for more data on the impact of treatment on fertility. The study also showed the need for the development of new approaches to preserve fertility in women treated for breast cancer.

Fast forward to 2012. A study which concluded that women who received specialized counselling about reproductive loss and pursuing fertility preservation experienced less regret and a greater quality of life. And yet “few patients are exposed to this potential benefit.”

It dismays me that all these years later, not much has changed. There’s still a real need to educate young patients about fertility issues and a need for more research directed at preserving fertility.

Guidelines presented by the American Society of Clinical Oncology (ASCO), American Society of Reproductive Medicine (ASRM), and National Comprehensive Cancer Network (NCCN) all state that premenopausal women diagnosed with breast cancer should be:

• informed about the potential impacts of treatment on their fertility
• given the opportunity for a fertility referral in a timely fashion.

Yet since so many women are not yet receiving the industry standard, let’s start here.

How does cancer treatment affect fertility?

Infertility can be a side-effect in young women having cancer treatment because of the sensitivity of a woman’s eggs to anti-cancer drugs. The effect of treatment on fertility depends on your type of cancer, where it is, your age, the type of cancer treatment you undergo and your response to treatment. Some breast cancer therapies may cause women to stop menstruating, either temporarily or permanently. Women who continue to have normal menstrual cycles may go through menopause earlier, or may be less fertile following chemotherapy. In addition, while standard hormone-based cancer therapies do not typically cause permanent infertility, they often require years of treatment during which women are advised not to become pregnant.

What are your fertility options if you have breast cancer?

Standard fertility preservation options like embryo and egg freezing can offer an opportunity to save fertility for patients who have the time and resources to undergo ovarian stimulation and retrieval. Ovarian tissue freezing—a procedure that removes and freezes ovarian tissue for later use could offer an alternative for women who can’t undergo egg freezing for medical reasons. While egg and embryo freezing can take weeks to complete, an ovarian tissue freezing procedure can be done quickly. The procedure, which is still considered experimental, may be a promising option for the future. However, far more research is needed to prove its success.

Is it safe to get pregnant after breast cancer?

If you are fertile after your treatment finishes, there is no evidence to suggest that getting pregnant increases your risk of your cancer returning. However, most women are advised to wait at least 2 to 3 years after a breast cancer diagnosis before becoming pregnant. Because the risk of cancer recurrence is higher earlier in survivorship, waiting to get pregnant is a way to prevent the difficult situation of finding a cancer recurrence early in pregnancy.

Other parenting options for cancer survivors

If fertility treatments aren’t a good choice for you, there are other ways to have a family after breast cancer, such as surrogacy and adoption.  Today, more adoption agencies are open to helping cancer survivors have a family. Your oncologist can support your application by writing a letter which outlines your cancer type, stage, treatment plan, and expected prognosis.

What questions should you ask your oncology team about your fertility and breast cancer?

Before beginning cancer treatment, there are a lot of decisions in a short amount of time. That makes for a lot of stress. However, it is important to talk to your medical team before you start treatment about the possible impact it may have on your fertility. Having a clearer understanding of your personal fertility risks and treatment options will help you make more informed decisions about your health care.

Some questions you might ask before undergoing treatment are:

• Will my cancer treatments affect my fertility?
• Is my infertility likely to be temporary or permanent?
• Can anything be done to preserve my fertility before my treatment begins?
• Will any of the options to preserve my fertility interfere with my cancer treatment?
• Can you refer me to a fertility specialist before treatment?

Some questions to ask after treatment are:

• How will I know if I am fertile after treatment?
• How long will it take for my periods to return?
• How long should I wait after treatment to become pregnant?
• If I become infertile, what are my parenthood options?

Being diagnosed as a young woman with breast cancer brings its own unique challenges. Today, more women than ever survive breast cancer, only to confront the long-term effects of treatment on their fertility. At the time of diagnosis, the focus is understandably on having your life saved. Unfortunately, this can sometimes mean that issues such as fertility get overlooked. It’s important that you know you have a right to get your fertility-related questions answered. This may mean you may need to advocate for yourself and your reproductive future. For many young women, preserving their fertility before starting treatment represents not just surviving the disease, but going on to live a fulfilling life.

Marie Ennis-O’Connor is a patient advocate who specializes in digital engagement and online community building. Her introduction to advocacy began after a diagnosis of breast cancer in 2004.   Finding herself isolated as a young woman with a disease that is more common in older women, she began to write about the experience in a blog, Journeying Beyond Breast Cancer. Over the years the blog has grown into an online community of information and support to other young women with breast cancer.  A Stanford Medicine X e-Patient scholar, Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare systems.

As an organization, we’re determined to talk more about this issue of building a family after breast cancer. Be on the lookout for more stories about the journey to parenting after breast cancer in the upcoming days. Meanwhile, you might be interested in Rebecca Pine’s reflections, including her story of getting pregnant after a breast cancer diagnosis. Also, Charro’s story of getting breast cancer while pregnant is very sweet.