BRCA threat: Prophylactic surgery fights cancer

Reprinted with permission from Ami Magazine

I am a 38-year-old Orthodox woman, and a mother of seven beautiful children. Three years ago I underwent a double mastectomy, oophorectomy (ovary removal surgery) and a full hysterectomy (surgical removal of the uterus); I am BRCA1 positive.

When I was five years old my mother died of breast cancer. Due to her death, my childhood was difficult and I experienced emotional traumas. As a result, my father couldn’t take care of me anymore and I left my home when I was 12 to try to find a home to live in. I had a very unstable and traumatizing childhood, moving from family to family, trying to find a stable home. As I grew older my biggest fear was having a family and doing the same thing to them. As the saying goes, man plans and G-d laughs, so as fate would have it, at age 18, I met my wonderful, beautiful husband. After a crazy romance for two years, we finally tied the knot and started our married life together. A year later, with the birth of our first son, our family life began.

My fears of dying would haunt me at times and get between us because I would talk about how I was going to end up like my mother. My husband did not like me thinking about it or talking about it, so deniability was the path chosen then. However, with each child we had, my fear grew stronger and stronger that I would do the same thing to my family. I kept thinking, how can I have all these children and then die on them? I started to speak to my doctors about this and they suggested a mammogram at the early age of 28, that, thank G-d, came back clean. I was able to relax for the time being; my time had not come yet.

Around this time we started to discuss moving and relocating with our four children to Israel. The next five years of my life were filled with moving, getting accustomed to a new country, new language, and, thank G-d, two additional beautiful children. After my sixth child, the doctors strongly suggested another mammogram and genetic testing due to my family history. They were very supportive and felt very strongly about it, but at the time I was still nursing and was unable or unwilling to face anything of what might happen to me. Before I had a chance for reality to set in, G-d blessed us with number seven; I was pregnant again so a mammogram was not an option.

Being pregnant and raising a large family in a foreign country left me little time to worry. One morning, about six months into my pregnancy, I had a very strong premonition pushing me to get the genetic testing done. I called the genetic testing center, explained to them what I was looking for, and booked the first available appointment. A few weeks later a close friend, who spoke Hebrew fluently in case I required a translator, accompanied me to my appointment, so I could determine if I needed to be concerned. The first part of the appointment was a long, in-depth intake interview comprising a full family history. From that it became clear that I was a high-risk cancer candidate. Not only was my mother very young when she died (42 years old), but her sister was also very young when she too passed away from breast cancer. One hour later I was approved and cleared to take the genetic test — a simple blood test. After the blood was drawn, I was told I would be called with the results to determine if I was a carrier or not and what options I had. Now came the hard part, the waiting.

Israel is very supportive of genetic testing, so the testing is completely covered if the requirements are met — that the patient is at high-risk. A high percentage of BRCA1 or BRCA2 carriers are found among the Jewish Ashkenazi population. Studies show that BRCA1 and BRCA2 have been linked to the development of hereditary ovarian and breast cancer. In addition, BRCA1 mutations may also increase a woman’s chances of developing uterine, cervical, pancreatic and/or colon cancer. Being told you are positive for the BRCA1 gene means that the chances of getting ovarian cancer is at minimum 70 percent. With a family history of breast cancer like mine, I was five times more likely to get cancer if I was BRCA1 positive.

Six weeks later we got the news I guess we somehow expected to get, and this is where my story of how I chose to live begins.

When I would speak to the doctors they would tell me it is not if, but when, I would develop breast cancer, without doing any preventive surgeries. After speaking with my doctors and Orthodox medical rabbis about my options, we decided on an oophorectomy/hysterectomy and a double mastectomy/reconstruction.

We scheduled the oophorectomy/hysterectomy for a few weeks after I would deliver my seventh child and my double mastectomy/reconstruction for five months from then. This was going to be a long, hard year, but my gut told me that what I was doing would be the only way I would be around to see my grandchildren. When my doubts started to overtake me, my doctors would tell me that I was a ticking time bomb and that it was not if, but more of when I would get breast cancer. This helped me reassure myself that I was making and made the right decisions on how to proceed.

I tried to enjoy the last few months of what would be my last pregnancy. In June my princess was born and in August my reproductive organs were all removed by one of the top oncological/gynecological surgeons in Israel. The recovery was more emotionally trying than physically trying. Knowing I could never have children again was hard and even today can be hard when I think about it.

Five months after the first surgery I was in the care of two top surgeons in their field in Israel, my breast and plastic surgeon. The care that they gave to me was impeccable and to this day I am thankful for their kindness and support. My breast surgeon held my hand when I was wheeled into surgery, promising to take care of me, reassuring me that all will be ok and telling me I was doing the right thing. Ten hours later it was all over, I had new breasts and the job was perfect.

The next few months of recovery were very hard; I had to rebuild my strength, balance my hormones, and deal with the emotional effects. I healed and got better a little more each day. Every time I doubted myself, G-d would send me a sign that what I did was the right decision. One day I had been crying a lot, my hormones were still out of whack from the surgery and I was feeling ugly and scarred when I met a young women with very short hair. I complemented her on her “cool haircut.” She said thank you, but that it was not out of choice. She told me that she was in her early 20s and had been diagnosed with breast cancer. I told her my story and what I had gone through. She said that I am “one lucky woman” and that she wished she had had my choice. I knew that G-d had sent me a message to tell me I made the right decision and that I was indeed one lucky woman.

There are many people who thought and still think I overreacted, mutilated my body and went the extreme route. They would ask me why would I voluntarily maim my body if I didn’t have any disease yet, but after I met that woman I knew the decision I made was the right one. I have never doubted myself since then and I am confident what I did was necessary and right. It is now three years since my last surgery, and I am all healed and feel great. I know that what I did was the smartest thing I could do to prevent history from repeating itself and I thank G-d every day for sending me that message to go get tested.

Now that I am moving forward in life, I would like to use my experience to help educate, support and speak about what BRCA1 and BRCA2 mean to a woman’s life. I want to share my challenges, questions, outcomes and happiness to show my fellow women how you can go on living a normal, happy and exciting life even after going through major medical surgeries. I want to educate a woman that being positive does NOT mean the end. By doing these surgeries a woman like me lowers the percentage of getting cancer to what the percentages are for any woman on the street getting cancer with no family history of cancer (less than 5 percent).

I hope that I can use my story to speak to people everywhere and make a difference in many people’s lives. If I can help someone make that hard decision knowing that there is a light at the end of this tunnel, it will continue to be well worth the journey.

Be proactive and with G-d’s help, win instead of reactive and possibly lose everything.

Tzippy.ellis@gmail.com