Health·Point of View

Angelina Jolie, my mother and her influence on difficult BRCA surgery choice

Personal story aims to raise awareness about BRCA gene mutations

Genetic testing offers young woman an option mother never had

My mother battled breast and ovarian cancer for years. The chemotherapy sessions, surgeries and radiation were a full-time job that gradually weakened and debilitated her. Her body gradually died, but never once did I see her spirit and determination to live diminish. Regardless, seeing the strongest woman I ever knew slowly become tired and lifeless was incredibly painful.  

Five days before she died, she said this to me: "If I knew then what you know now, everything would have been different. If I could have gone back and changed everything, you don't think I would? I think about it all the time."

In her final remission of ovarian cancer, my mother tested positive for the BRCA 2 gene mutation. This was before Angelina Jolie made headlines with her BRCA 1 story. We didn't know such a gene existed. But we knew that recurring cancers riddled my family. At age 27, I also tested positive for the BRCA 2 gene.

This meant my risk of breast cancer was close to 70 per cent and my chance of ovarian cancer was close to 20 per cent. In the initial moments of my genetic diagnoses, I felt it was a curse. It was the defining factor that meant years of suffering for my mother and ultimately I feel the cause of her death.  

After two years of gathering information about what options were available to me, I decided to undergo a prophylactic double mastectomy. This was not my only option. But I felt it was right for me. There is regular screening available for high-risk patients. There are drug options that lower the risk of these cancers, like birth control and tamoxifen. But I knew that the idea of living my life, constantly looking over my shoulder for a cancer diagnoses was not for me. It was not a life I was willing to take on.

There were many factors to consider. I wasn't a mother yet. I was now 28 years old, but not young enough to be out of the realm of impending cancer. The surgery meant that I would lose the ability to breastfeed my future children. It also meant bodily scars, loss of feeling in both breasts and two very invasive surgeries. 

The timing of this surgery forced me to plan my future accordingly. I decided, when weighing out possible scenarios, that cancer was far worse than not being able to breastfeed.

My partner had a lot of influence in my experience. He attended all my appointments ready with questions. He listened to all my concerns. And most of all, he reminded me that my health is what mattered most to him. To all men in a similar situation: Your actions in this are important and valued. And your wife or girlfriend will care greatly how you react and how you show support.

My double mastectomy surgery was a success. But it was hard and painful. All of the tissue was removed from both of my breasts and over time implants were slowly filled to stretch the skin back to my original breast size. It felt like a Mack Truck was parked on my chest. But slowly and with time, like all pain, it got better and I became stronger.

Decision doesn't fall on celebrity bandwagon

In six months, I had a second and final surgery, which was the cosmetic reconstruction. It's now behind me, and I feel no less like a woman than I did before. With or without clothes, no one could ever tell what my body has been through. I feel empowered and secure about my future well-being. I'm very lucky to beat the devil I know, instead of being hit by the devil I don't.

I still have a 20 per cent chance of ovarian cancer. After I have children, I have decided that I will have a full hysterectomy.

People have asked me if my decisions are based on those of the actress Jolie. I want to be very clear. Jolie has raised huge awareness on a game-changing development in familial cancers. If she has helped just one woman get tested for the BRCA gene and potentially saves her life with proper prevention then she did a remarkable thing. But, this is not the kind of decision that falls on a celebrity bandwagon. No woman is doing this because of celebrity admiration. They are doing it to save their life, just like Jolie did.

BRCA mutations account for about five per cent of all breast cancers and up to 11 per cent of all ovarian cancers, according to the Canadian Cancer Society. If your family has a history of breast, ovarian or prostate cancer, please talk to your family physician. This all starts with a conversation between you and your doctor.

At this point, I feel the mutation was not a curse. It was empowerment. To live in a time where we have access to such knowledge and to be in a position to make a clear choice in preventing cancer in my life is amazing.

I know now that my mother's death was not in vain. It is because of her that I and other family members were tested and have taken the proper steps to try to ensure our ending doesn't have to be the same as hers.

Kenzie Broddy is a producer at CBC News Network.
 

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