A-Z of Blogging: I is for Infertility #AtoZChallenge

26 posts. 26 days. 26 letters of the alphabet, one blog post beginning with each letter.

I is for Infertility

As regular readers know, infertility was  (and continues to be) the most devastating aspect of being diagnosed with breast cancer for me.  It has caused me life-long pain and grief which I still haven’t come to terms with.

My friend Justine uses the words “soul scars” to describe the pain of infertility, “but these forever scars are invisible to the outside world,” she says, “and many times are completely misunderstood, invalidated, minimized and sometimes even ignored”.

The pain is intensified for me because things might have been different had my oncologist discussed fertility options before I started chemotherapy. There is a brief window of opportunity in which to preserve fertility before treatment begins. I didn’t know this fact. I didn’t know that cyclophosphamide,  the drug I was about to take, has the highest risk of ovarian toxicity.

It’s a conversation that I should have been able to have 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 about my treatment.

I only found out about the possibility of infertility, while doing some research on the Internet, after I had already started chemotherapy. It was extremely distressing to find out this way. I felt cheated and betrayed and it has led to a life-long distrust of the medical profession.

Way back in 2004,  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 makes me so angry that all these years later, not much has changed.

A study published in 2012 found that women who received specialized counseling about reproductive loss and pursuing fertility preservation experienced less regret and a greater quality of life.  Unfortunately, research shows that doctors often don’t provide enough information about what can happen to fertility with different breast cancer treatments, and most doctors don’t direct patients to fertility specialists for counseling before treatment begins.

Understandably, many doctors consider treating breast cancer more important than fertility issues. But patients should not have to choose one or the other.  If a doctor doesn’t bring up the conversation, patients will need to be their own advocates for their reproductive future.

The following questions are a good place to start the conversation:

• Will my cancer treatments affect my fertility?
• Can I check if I’m fertile before treatment starts?
• How will my age affect my fertility?
• Is my infertility likely to be temporary or permanent?
• Can anything be done to preserve my fertility before my treatment begins? (It may be possible to freeze your eggs or embryos before treatment begins.  The Rotunda Hospital in Dublin provides this service.)
• How long after treatment will I have to wait to find out if I’m still fertile?
• Will having treatment to preserve my fertility delay my cancer treatment?

When a patient is diagnosed with breast cancer, many stressful emotions arise and with so many decisions to make about treatment, sometimes fertility discussions get overlooked. It’s important that young women with a diagnosis of breast cancer know they have a right to get their fertility-related questions answered. Having a clearer understanding of their personal fertility risks and treatment options before commencing treatment will help patients make more informed decisions about their treatment.