Sisters: Sharing Loss, BRCA Fears, and the Future
LPM: Tell us about your mom.
Adina: My mom was a beacon of beauty both inside and out. She had a modest, radiant elegance about her. I remember her passion for drama, poetry, and art. She was unbelievably talented and spent the last several years of her life improving her technique and skill. I only truly appreciated this after her death. She left us drawings, journals, poems and pottery that now hold immeasurable significance as they give us a tangible connection to her and her essence. Still, it was her spiritual journey that was most inspiring to me. Through some of the most difficult days of her illness, and through the pain and anger of her circumstance, she never gave up her faith or her commitment to her family, friends, and community. When I struggle with my own challenges, I often think of her and draw strength from her resilience.
Leora: My mom was one of those people who was good at everything. She was brilliant, creative and a friend to everyone she met. She became a Ba’alat Teshuva when she was in college at Princeton and went on to become a lawyer. Her depth of knowledge in not only general things but also Torah related matters was something that set her apart as an individual. I remember as a child sitting with her at the kitchen table as she would look at slides under a microscope, showing me the different parts of the species. I would watch her paint at her easel for the art classes she took when she could no longer work. The memories I have of her are very faint, and often the ones that are the strongest are the ones that were the scariest for me. Most of what I know about my mother comes from what other people have told me or from watching old family videos. My father, in particular, was very good at capturing as much as he could on video. I often cling to those videos in lieu of my lost memories.
LPM: Tell us about your mother’s passing. At what point did you understand what “Breast Cancer” meant?
Adina: My mom lived a remarkable five years following her metastatic diagnosis in early 2000. During those years, apart from her regular treatments, life basically continued as normal. My mom took a leave of absence from her job as a successful attorney, and spent time at home with us, trying to hold on to the last precious years of her life and her children. I have very happy memories during these years of outings, vacations, and time spent together as a family. Her death in August of 2005 followed a very traumatic several months of swift deterioration. I prayed that G-d would take her quickly and peacefully because watching her suffer was excruciatingly painful. At the time, I felt both sad and angry – but as the eldest child, I pushed those feelings aside. It was an effort to power through the devastation so I could support my dad and my two younger siblings. Honestly, it wasn’t until years later that I actually began to process the grief. I mourned (and continue to mourn) her loss at every milestone.
Leora: We all knew it – Ima had cancer. She was diagnosed a week before my second birthday, and I was too young to remember anything. I don’t remember when she went into remission, and I don’t remember when it came back the second time. It just was. Cancer was one of those unspoken realities. All I knew was that she had to go to the hospital for treatment, had to give herself shots and that her breasts weren’t real. It was my normal, but not in a sad way. I never felt like I was lacking in anything because of her illness; I still went to school, we still went on trips, Ima was just dying.
I was eight when her health started to noticeably deteriorate. The cancer had metastasized to her brain and she started going blind and had to walk with a walker. When I was nine she went into the hospital for a procedure; the doctors said she would walk out that day, then two days, then a week and then we were told she would not be coming home. She died in her sleep in the early morning a couple weeks later. We all went to the hospital to say our goodbyes. I remember everyone crying except for me. I was just a child, and in a way, I had come to my own peace about her dying before it happened. In the mind of a child a parent is invincible, and seeing my mother in a hospital bed so weak felt unreal. Up until that point, breast cancer had been such a normal part of my life that I didn’t know that it was uncommon for other families. When she went to the hospital that last time I understood: my life was different and it was because of breast cancer.
The word that had been so common in my vocabulary set me apart from all of the other children in my class. At the same time, it made me stronger. For a long time, I didn’t understand why I often felt like I had a different view and understanding than others my age. Over time, I realized experiencing illness and death had given me a different perspective on life.
Adina: The first time I ever heard of Breast Cancer was around the time of my mom’s initial diagnosis. I was eight years old. Through the subsequent years of her brief remission and metastatic recurrence, we continued to talk about it openly. Chemotherapy, radiation, double mastectomy, BRCA gene – these words became a regular part of our vernacular at home. Breast cancer became a part of my everyday life. Speaking about it frequently actually helped me deal with some of the worries that came along with testing and preventative screenings. I became desensitized to it in a way, but it meant that I had built up enough emotional resilience to be proactive about my long-term health.
LPM: Was your mother tested for the BRCA gene mutation? At what point did you realize that you should be tested?
Adina: My mom first tested positive for the BRCA 2 mutation when she was diagnosed with breast cancer at the young age of 38. We had a family history of breast and ovarian cancer – the results were unsurprising. My mom felt that by getting tested, she would empower her children and other family members to make their own future health decisions. She often discussed getting tested with us – my brother, too – as there is an additional risk in men who carry the genetic mutation. She encouraged us to do whatever possible to manage our health and to remain informed and educated about our options and available resources.
Leora: The BRCA gene runs in our family. It was something spoken about openly in my family, but again, it was just one those things that was a part of my view of ‘normal.’ It still didn’t really hit me that I had a risk of having the gene until I was in high school learning about Punnett squares. I remember going through the different likelihoods with recessive and dominant genes, learning about eye color and hair color and then cancer. Learning something so basic and scientific really affected me. That was when my experience as a child really sunk in.
I began to grieve the loss of my mother. So many years later I realized that what I had experienced wasn’t just a one-time thing; I would need to take preventative measures for the rest of my life. I started to learn everything there is to know about the BRCA gene and spoke to my family about when and how I should get tested. I was instructed to get tested at age 25; today at 22, I just have to wait.
LPM: Adina, have you been tested yet?
Adina: I first thought seriously about testing when I was in college and living in New York. I went to meet with a genetic counselor at Sloan Kettering to discuss my family history, testing options and timeline in terms of talking to my doctor about additional precautionary exams. At the time, although I was too young to actually do anything apart from self-breast exams, it felt good to be proactive and to know that I would have time to process the information that we discussed. By the time I moved down to Florida a little over two years ago, I was 25 years old and had already decided to get tested as soon as possible. For me, testing meant knowledge and knowledge meant power. Regardless of the outcome, I felt that knowing would give me some small level of control.
I remember receiving the results early one morning before heading to work. The genetic counselor called me and whispered in a sad, regretful tone that I was indeed a carrier. Though I had mentally prepared myself for that moment, there was something very definitive about receiving the positive results. This was it. It was happening. This would affect me for the rest of my life. My husband comforted me as I took a few moments to face this reality. After moving through that initial grief, I remembered why I decided to get tested in the first place – I called my doctor for a follow-up appointment the very same day.
Since receiving my positive results, I have had several mammograms, MRIs, and ultrasounds. I will continue to take these preventative measures on a yearly basis. In addition to annual visits with my doctor, I see an oncologist and breast specialist every year. I often sit in the waiting area of the imaging and screening department and laugh to myself because, at my young age, I look so out of place. At the end of the day, I am proud that I have been so dedicated to taking control of my health.
One of the hardest decisions that I have had to make following the results of the BRCA test was the decision about whether or not to pursue IVF when my husband and I were ready to start a family. We seriously considered it for several months. The benefit of knowing conclusively that my children would not carry the mutation was extremely appealing. In the end, however, we opted against it with my first pregnancy. I gave birth to a beautiful baby boy almost six months ago. Often, I wonder whether I made the right decision or not. I haven’t decided yet about whether to use IVF for future pregnancies. The pros and cons of the process continue to weigh on me.
LPM: Leora, can you share some of your feelings about getting tested?
Leora: Whenever any genetic testing options came up in the past, I shied away from them because I didn’t want to know. Right now, I’m too young to have this knowledge weigh on me. At the same time, there is a fear of the unknown. When I started dating the reality became a lot more real. Here I am, meeting these people who I could potentially partner with for life, and I have to picture two distinctly different futures: one with me having the gene, and one without.
I know the moment I find out my results a part of my life will be changed forever. Many times I have thought about just getting it done; the unknown is often scarier than the knowledge itself. “What if?” can be paralyzing. I then think about how free I am right now, not as much in an “ignorance is bliss” way, but with the understanding that even if I knew right now, there is nothing I would be able to do. I frequently wonder what my results will be. Is there something I received from birth that I don’t know about but will affect my life forever? Or will I have the same likelihood as anyone else?
LPM: Do you have concerns about the future?
Adina: In addition to the IVF consideration, I am most concerned about the future decisions that I will have to make about whether or not to have a prophylactic procedure. On the one hand, a double mastectomy would significantly reduce my risk of contracting the disease. But I think back to my mother’s experience and worry about all of the physical and emotional challenges that accompany these significant body changes. Would I look at myself and my body the same way? Would it affect my relationship with my husband? An oophorectomy would be another consideration – and it comes along with a whole host of physical side effects. My focus at the moment is twofold – to have my children as soon as I am able to and continue to maintain a relationship with the doctors who are managing my regular screenings. I continue to educate myself as much as possible about new findings, research, procedures and anything else relevant to my situation to put me in the best possible place to make an informed decision when the time is right.
Leora: My mother won’t be at my wedding, just like she wasn’t at my Bat Mitzvah, or graduation, or Aliyah. I moved to Israel a year and a half ago. One of my first concerns upon arriving was what I would do if I had the gene or got sick. I don’t know the system here like I do in America, and everything runs differently including a different language. It has taken me some time to get the hang of things and I have started researching what the procedure is for women with the BRCA gene within the country. I know there are many resources here but nothing really feels secure when you are not in your native language and comfort zone.
I recently became engaged. I’ve known my fiance since high school, so we didn’t have to go through the awkwardness that usually comes right after telling people my mom died. The words “breast cancer” are daunting; I used to feel like people would treat me differently, pity me or not want to date me. These fears caused me to hide the fact that my mom died for a time. I kept it as a secret reserved only for those closest to me.
At some point, I realized that was silly. Why should I be ashamed? My mother was the strongest person I ever knew and the strength she bestowed to me and my siblings is unique. Today, I am very open about my mom’s death, though people don’t usually feel comfortable asking details.
When my fiance and I started getting serious, we spoke about my risk and how it could affect our lives. It was no longer just my life that I was thinking about, but our life and the life of our future family. I often would wonder: do I really want to put them through what I went through? At the same time, it also became easier because I knew that I would have someone there right next to me, no matter what happens.
LPM: What is it like to share this experience with your sister?
Adina: As the older sister, I am happy that I can have these experiences and share as much as I can with Leora. Having someone close to you who is going through the same struggles, questions and fears is both comforting and nerve-wracking. Comforting because we can both lean on each other for support. But nerve-wracking because in some way I feel responsible for “protecting” her in addition to myself. Leora and I have discussed what to do in the event that she tests positive and the importance of screening regularly. I hope that any information that I relay to her as I go through my own journey helps her make educated decisions about her health.
Leora: From a young age, I’ve looked up to my older sister. She was always the first to do things – her experiences have helped guide my life choices. When she told me that she tested positive for the gene, I was devastated. But she didn’t dwell on the sadness of her results – she just continued to tell me what this meant for her, how she is going to go about it and encouraging me to understand the options. We may live in different countries, but our relationship has never been bound by distance. This situation is no different. If anything, it has made us closer.
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.