Amy’s Story: Making Choices For Me

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(1/6) “The Inevitability of My Genetics”

“I grew up in a household where my mother was a cancer survivor. As long as I can remember, breast cancer was discussed in my house. My mother was first diagnosed with breast cancer prior to having me, at 26, I was born when she was 34, and she had it again at 36. My mom never tried to hide the fact that she had cancer from us.

It wasn’t until my early 20’s that the information about breast cancer started to become more accessible. I heard through a friend that her mother was being tested for the “breast cancer gene.” I asked my mom if she had ever heard of it, and she had. She suggested that we all get tested. I was 24 and was tested along with my younger sister and mother. It was a simple blood test, and there was never a doubt in my mind that I wanted to get tested, knowing what the outcome could be. I always had a fear of getting cancer because my mom had gotten cancer so young, so if anything, I thought that if this test came back positive, it would validate my anxieties about getting cancer and if it was negative, it would not invalidate them, but it would be exploratory.

It would take about two weeks to get the results, during which time it happened to be Rosh Hashana and Yom Kippur. I remember someone commenting in shul to my mother, “Is Amy ok? She is davening really hard.” My head was in the siddur the entire Yom Kippur and I wouldn’t talk to anyone.

We waited for our results for 2 weeks. I received a call at work that all of our results were available. We all had a conference call, and we were told on the phone that all three of us – my mother, my younger sister, and myself – had tested positive as carriers for the BRCA 2 gene mutation.

After the call, my mother confessed that she had already known, for the last 20 years, that she was a carrier, but had kept this information from us. We were both so young, and she didn’t want us to alter our lives. This would only give us more reason to be fearful or anxious, especially since I was already so anxious. She wanted to spare me the anticipatory anxiety surrounding the test and give me the space to come to this on my own. When I was ready to get tested, she had all the information prepared.

We were all bawling on the phone when we received the results that we were carriers of the BRCA 2 gene mutation. I was hoping that if someone would be positive it would be me, to spare my sister. My mother was trying to spare us from this, and we got it anyway.”

 

(2/6) “The Mutation Mistake”

“The reason we were even able to get tested to begin with, was because my mother was a part of the initial BRCA testing in the early 90’s. At that time, the Lauder Foundation had put out a call for women with breast cancer to participate in this initial screening process for the BRCA gene mutations, and my mother had been a part of that inaugural group.  

When my mother got her results, the company that did the test had originally sent a letter informing my mother that she was not a carrier, but her geneticist, knowing her history, believed that she was indeed a carrier and asked for a clarification. The letter had been generated incorrectly, and my mother was indeed a carrier. In an effort to right their wrong, those who were at fault told my mother they would test any relative whom she wished. Were it not for this mix-up and the subsequent offer, my sister and I would have been dismissed as too young to be tested and would not have known about our carrier status for years.

My 25th birthday found me sitting in a breast oncological office, beginning my foray into surveillance – the process of checking regularly to ensure that no cancer has appeared – and discussing my surgical options. This is what my life would look like now that I knew I was a carrier of the BRCA 2 gene mutation. The doctors were dumbfounded that I was so young; people as young as 25 generally haven’t yet been tested and don’t yet know about their carrier status.  

At my initial consult, I was told that every six months I would need a breast MRI, a mammogram, a breast check by a doctor in between these six-month tests, ovarian sonograms, and more scans. My sister and I were the youngest people that the doctors had ever encountered with the BRCA 2 gene mutation and all this information was overwhelming. It was a sad experience to find out that I was BRCA positive and I allowed myself to have a pity party for a bit. Then I took control of the situation and decided that I was fortunate to have this information and that I would get ahead of it.

With an 85% risk of cancer, how could I take those odds? I didn’t want to just wait and see what would happen. It was new information, but technically, nothing had changed about me. I had been born with this gene mutation and, although I only became aware of it at 25, I was still the same person I was before I discovered that I was a carrier. I wanted to take this opportunity to give myself the power to decide what the next step would be. I threw myself into all the decisions that I needed to make. And the decisions were many.”

 

(3/6) “A Prophylactic Mastectomy, For Peace of Mind”

“After beginning the surveillance process, all the MRI’s, breast checks, and scan, I knew I didn’t want this to be my life. I was always an anxious person and to think that every three months I was going to need some sort of testing, which would often need follow up, was just too much. It was and would be a constant source of anxiety.

I decided early on that I didn’t want to live like that. I made a decision that I wanted to get a prophylactic mastectomy. I think I always knew that I was going to get it, from the moment that I found out that I was positive for the BRCA 2 gene mutation. While being the most extreme option, it would eliminate the largest amount of risk and could mitigate my anxiety. I hoped it would give me some peace of mind.

I was left with hundreds of decisions- I went to conferences, I spoke to doctors, patients- which was all helpful. But there was no one like me because I was 25. Doctors didn’t even want to see me till I was 30 or 35. I didn’t want to live those intervening years having BRCA define me, and define my life. I didn’t want to be anxious for the foreseeable future.

I learned about all the different options, incisions, scar patterns, saline, silicone, nipple/skin sparing mastectomies. I did my due diligence, I had the opportunity of time on my side. I did not have cancer, and I could take my time to think, research and figure out what I really wanted. I knew that I was lucky.

I was single, and one day I wanted to have children. I had to reconcile the fact that I was never going to breastfeed my children. I mourned that loss and decided that not breastfeeding would be totally ok because I would be eliminating as much risk as possible so that I knew that I could hopefully be there for my children.

I went to seven different doctors, in various different states. Each one told me what they wanted to do to me, not what I wanted them to do. It was a long search, with many surveillance scares along the way (the scans showed things that needed to be followed up on). I finally found doctors in New York at Mount Sinai- a plastic surgeon and a breast oncological surgeon (who need to work in tandem). They were the ones who gave me hope and gave me back my life, and I will forever be grateful.

I was afraid I was going to have terrible scars, and that I wouldn’t be able to find a partner who would want to deal with this. Both of these doctors told me that they could do exactly what I want to do. The relief and joy that they gave to me, I can still feel. It took a year and a half to find them, but it was worth it. They said yes when everyone else said no.”

 

(4/6) “My Fairy Tale Moment”

“During the time when I was making decisions and doing research, I met my husband. I was petrified to tell him that I was positive for the BRCA 2 genetic mutation and I had decided to get a prophylactic mastectomy. I had dated guys before but I had never gotten to the point where I felt like I wanted to tell them everything. I remember building it up in my mind, ‘how am I going to tell him?’ I couldn’t think that anyone would be open to this. To think that I was going to have surgery before I got married, and I could pass this genetic mutation down to potential children. It was a lot to tell someone.

I finally built up the courage to tell him, and it was met with relative ease. It helped that he was in grad school for psychology because he knew exactly what to say. This big deal turned out to not be a big deal. He continued to push me to find a different doctor, telling me that there would always be another doctor and that I should find someone who would do the surgery that I wanted. I thank him for pushing me because after a year and a half I was tired of searching. I was ready to give up what I wanted, just so that I could move on. Dovid’s encouragement and support gave me the strength to keep looking until I found my team at Mount Sinai.

I learned that Dovid’s mother passed away from breast cancer when he was young. She was sick for seven years, and his grandmother passed away from breast cancer as well. This news brought a sense of commonality. As devastated as I was to learn about his losses, that experience shaped him to perfectly understand what I was up against. He could face the gravity of the situation, and why I would be making the decisions I was making.

He proposed the night before I went into surgery. I arrived at the hospital with my engagement ring on my finger.

In the midst of this difficult and anxiety-ridden time, I was able to squeeze in a fairytale moment of happiness.”

(5 /6) “Choices”

“We told my mother’s sister that my sister, mother and I were BRCA 2 positive for the genetic mutation. Though she was already taking preventative measures because her sister had breast cancer, our disclosure prompted her and some other female family members to get tested as well. 5 blood-related women were tested in a short amount of time, and we are all BRCA 2 positive.

We have all taken different measures for what we have done with this information. My mother had breast cancer and opted to have a full hysterectomy, another had a full hysterectomy and did Tamoxifen prophylaxis, another had a bilateral prophylactic mastectomy (different type than me), and another is doing specific types of surveillance.

Before I was even tested, I think I knew I would be BRCA positive all along. My mother had cancer twice, before age 50. We also had male breast cancer in my family. There were so many red flags. Before the scientific world even knew that those were the classic red flags, I had a feeling that this might be my future. Getting my results brought me a sad sense of calm. I was afraid of this, but at least my fear was validated. It was all leading up to having to take control of my journey. I knew I didn’t want to wait and see.

I got my surgeries and had a staged approach, consisting of three surgeries, spanning two years.

After the surgeries were done and I was finished, I wondered if the anxiety was going to go away. I worked with a cognitive-behavior health psychologist which really helped resolve what was left with my anxiety. But it took time.

Though I had reconciled all of this- my losses, my choices, my future- when it was all over, I was still left thinking, ‘What did I just do?’ This surgery is irreversible, and I was happy with my decision. I just know that I can’t go back.

I was done with the breast concerns, but I knew that I would eventually have to deal with the ovaries too.”

(6/6) “The Future”

“We know how the Punnett square works. We know what the risks are. Considering both our families histories we knew we needed to be proactive in planning to have children. Sometimes I think how different my experience has been than that of my mother’s. The difference of 40 years, between my mother and I, in terms of medical and preventative care options has been tremendous. G-d willing, the options will be even more advanced for my children, in the future.

Nevertheless- my husband Dovid got tested to see if he too, was a carrier for the BRCA gene mutation. He was the first male to have his test covered by our insurance. Thank G-D, his results came back negative.

In 2014 we had a son, and in 2017 we had a daughter.

I know that I will need to remove my ovaries at some point in the not so distant future. For now, ovarian surveillance is working for me (b’ah) and I live my life in the present while preparing for the future.

For the past 7 years, I have been a peer supporter for various organizations and have spoken to many different women. I speak to them on the phone, over email, have facetime sessions, share my experiences and be an ear for them to ask the questions that they don’t know how to get answered. Sometimes the most important aspect is to be able to laugh and be honest in a serious conversation. Ten years ago, there was no one like me. I was unattached, with no children and had this prophylactic surgery. My goal has been and still is to be the person that has been through it and is like them.

My BRCA experience doesn’t define me. It’s a part of my life just like, getting an education, working, having a family. I’m a regular person, and I know how lucky I am to have been given this wonderful information so I could change my life for the better. This experience has helped me in countless ways, and yet still, I am so much more than BRCA.”

 

Shira Lankin Sheps graduated from Hunter College School of Social Work with an MSW in clinical social work. After working in the clinical field, marketing and photojournalism, she decided to start The Layers Project to help break down stigma and promote healing within our Jewish community. She feels strongly about presenting women, who are so often shown as shallow characters or fully removed from Jewish media spaces, as three-dimensional individuals whose lives are full and rich with resilience. Shira is the founder, Publisher and CEO of The Layers Project Magazine.