What We Can Learn from Breast Cancer Survivors about Breast Cancer

According to the CDC, breast cancer in the United States is the most common cancer diagnosis for women regardless of race or ethnicity (excluding skin cancer).

Compared to those in the general population, women with a harmful mutation in the BRCA gene are at significantly increased risk of developing cancer during their lifetime (i.e., 40–87% breast and 22–65% ovarian for BRCA1 carriers; 18–87% breast and 10–35% ovarian for BRCA2 carriers).

Men are also at risk for breast cancer. Indeed, men with the BRCA2 mutation have a 1 to 10% risk of developing breast cancer during their lifetime; this risk is ten times greater than men in the general population.

While this information about breast cancer is important, as a patient and a professor, I also think we can learn much from “real” patients’ life experiences. It is through stories, and by listening to those stories, that we may understand how breast cancer truly impacts patients’ lives.

In light of October being Breast Cancer Awareness Month, I recently asked my mother and her sister, my aunt, the following question: As breast cancer survivors and BRCA2 mutation carriers, what do you hope others understand about breast cancer? Below are their responses and my reflections of their responses.

My Mother and her two sisters. My mother (far left) and one of her sisters (far right) have battled breast cancer.

My Mother — Diagnosed at 38-years old, BRCA2-positive, 18-year survivor

What do I hope people understand about breast cancer? For breast cancer patients I hope that if you’ve had a breast cancer diagnosis, you are wary of those who say, “I know a person who was diagnosed with cancer…” I hope you are wary because their stories, though meant to be optimistic, aren’t always so. They may begin their story with a description about how well their friend did during chemotherapy. And yet, the story might end with “…but after a long struggle, she died.”

As I have reread my breast cancer journals, I have been struck by how many times I was traumatized by these stories, meant to make me feel better, but in actuality made me feel worse. The fear would balloon up in me as the story progressed until I felt ready to explode: I imagined droplets of fear-covered me splattered all over the room, and it would take me a week to gather up those pieces of me — minus the fear.

So when someone begins, “My friend’s mother had cancer, and…,” I hope you give yourself permission to say, “Does this story have a happy ending?” If the answer is yes, then revel in it; fill yourself up with hope and strength.

On the other hand, if the answer is no, think about doing yourself a favor and saying, “I appreciate your efforts at trying to make me feel better, but I have to be careful what I listen to these days. I want to focus on hope.” And yes, you may feel awkward, at first, stopping a person because you don’t want to offend; however, it is infinitely better than living with their terror-creating words crashing around in your head.

The Take-Away Message: My Interpretation

  1. While a breast cancer diagnosis may be traumatic, one way to cope is to focus on hope.
  2. You have the ability to control what information you are exposed to. Sometimes it feels awkward to advocate for yourself, but, if it helps your emotional well-being and ability to cope, do it.
  3. Communication is powerful. Keep in mind what you say, post, tweet, etc. because it has the power to impact others around you.

My Aunt — Diagnosed at 38-years old, BRCA2-positive, 16-year survivor

What do I hope people understand about breast cancer? In a very real way, having breast cancer was a milestone for me in becoming an adult. It helped me become more aware of my mortality and vulnerability. Knowing that I’m not invincible and that the present matters IS a strange and beautiful gift. My head turns now so much more easily to anyone in my life who is struggling physically or emotionally.

Life is rarely seamless. I get it in a different way. Cancer has been an unexpected way for me to learn how complicated, painful and wonderful it is to be human.

The Take-Away Message: My Interpretation

  1. While no one wants to hear the words “You have breast cancer…,” our health experiences can help us grow into the individuals we desire to be.
  2. We are not invincible. You never know what people around you are experiencing, feeling, etc. Be kind and compassionate.
  3. Life is a journey. Not a destination. Life may be full of pain, but that pain can remind us to love the people around us and cherish the moments we have on earth.

May we continue to raise awareness about breast cancer…Yet not forget to listen to those who have actually endured a breast cancer diagnosis. May we cultivate hope.

“Hope is being able to see that there is light despite all of the darkness.” Desmond Tutu

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