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I Wish I Had Known Earlier...If Your Oncology Team Doesn’t Mention the Topic of Fertility, Then You Should Bring It Up Yourself

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This post was contributed in response to Jessie Gruman's What I Wish I’d Known Earlier about Cancer Survivorship series about the unique needs and responsibilities of people who have been diagnosed and treated for cancer.

I wish I had known earlier that the topic of fertility preservation for younger women with cancer is often inadequately addressed. This was the situation I found myself in when I was diagnosed with breast cancer at the age of 34. When I brought up the topic with my oncologist, I was presented with a stark choice between life-saving treatment or a chance at becoming a mother. The decision to initiate fertility preservation must be made quickly before cancer treatment begins.  The sense of urgency, the stress of the cancer diagnosis, and insufficient support and information meant I didn’t feel I had time to explore my fertility options before treatment began. This ultimately had a negative effect on my emotional and psychological healing from cancer. I wish I had known that in fact I did have options and a brief window of opportunity in which to preserve my fertility prior to undergoing cancer treatment.

Infertility is a common 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, gender, 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, and 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.

In 2004, when researchers surveyed 657 members of the Young Survival Coalition (YSC), a breast cancer patient advocacy group, on their attitudes about fertility , 57% of patients reported being very concerned about becoming infertile, regardless of their age or stage of disease, while 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, as well as the development of new approaches to preserving fertility in women treated for breast cancer.

It is sobering to note that in nine years, not much has changed.

The results of a 2012 study concluded that receiving specialized counselling about reproductive loss and pursuing fertility preservation is associated with less regret and greater quality of life for survivors, yet few patients are exposed to this potential benefit. Women of reproductive age should have expert counselling and should be given the opportunity to make active decisions about preserving their fertility. Additional research in these areas will help physicians and patients select treatments that are optimized to meet both medical and future fertility goals.

With all the decisions you must make regarding treatment, sometimes discussing fertility with your doctor may not be uppermost in your mind. However, it is important to talk to your medical team before you start treatment about the possible effects 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?
  • Does pregnancy after treatment increase the risk of recurrence?
  • 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. While at the time of diagnosis, the focus is understandably on having your life saved, this can sometimes mean that issues such as fertility get overlooked, so it’s important that you know you have a right to get your questions answered, and 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, and it is a key survivorship issue which must be adequately addressed.

More Blog Posts by Marie Ennis OConnor

author bio

Marie Ennis-O’Connor is a member of Europa Donna - The European Breast Cancer Coalition. She has co-authored a booklet on Breast Cancer and Fertility  to provide patients with the information and support they need to make informed decisions about their reproductive choices when facing a diagnosis of breast cancer. Her blog, Journeying Beyond Breast Cancer, won best health and well being blog in the Blog Awards Ireland 2012. You can connect with her on Twitter at @JBBC.


Tags for this article:
Cancer   Patient Engagement   Make Good Treatment Decisions   Jessie - Cancer Survivorship Series   Women's Health  


Comments on this post
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Jennifer says
August 21, 2013 at 11:44 AM

thanks so much for highlighting this important topic. like the author i found myself unsupported and lacking the information I required at the time of diagnosis when it came to my options to preserve fertility. It caused me a lot of anguish not just at the time of treatment but for a long time after treatment ended. My story has a happy ending. Three years after treatment I am pregnant with my first child. Never give up hope, but do, as the author says explore your options when you can.

Gia says
August 21, 2013 at 3:43 PM

great piece. it is true that sometimes when a patient is caught up in the shock of diagnosis they don't always think about these long term implications, so it is good to bring attention to this important topic

Beth Gainer says
August 21, 2013 at 4:06 PM

A wonderful post on a subject near and dear to my heart. I had a similar experience and found myself infertile after cancer treatments. It was heartbreaking. Thank you for your courage and candor in sharing this devastating part of cancer's aftermath. This is an excellent post on a timeless topic.

@Stales says
August 21, 2013 at 6:00 PM

Excellent advice! This is such an important topic that's still not addressed as often as it should be - thanks for writing about this!

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December 13, 2013 at 8:15 AM

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