Choose Life| May 10, 2022
I was engaged when I discovered that I was a carrier of the BRCA gene
With my new chassan by my side, we waited in the genetic counselor’s office for the results of my testing. Her office was bright, overlooking the busy streets of New York. The walls were papered with her many academic achievements and the family picture on her desk gave me a glimpse into the happy home she must return to after her heavy days at this job. I shifted in my chair, glancing down at my to-do list, but was unable to think of anything other than the present. I looked over at my chassan and wondered what he was thinking. He smiled gently at me in an effort to calm my obvious angst.
After what seemed like forever, the genetic counselor entered the room, file in hand, a pensive look on her face. Could it actually be? I’m a healthy 26-year-old! I was going down a mental rabbit hole as she sat down and opened her file.
We sat there in silence for a couple of minutes.
Finally, she spoke. “Deleterious.”
I was a carrier.
I’d always known bits and pieces of my father’s family medical history, but I’d never really stopped to think about how many loved ones he’d lost to cancer: My father’s mother, grandmother, and aunt had passed away from breast cancer in their forties and fifties, and his first cousin had died of ovarian cancer at the young age of 36.
A well-versed oncologist himself, my father felt it was his responsibility to find out if he too was at risk for these cancers — or, more specifically, to find out if his daughters were at risk. (While these cancers do affect men, women are more commonly affected.)
When my father got tested, he learned that he was a carrier for the BRCA1 gene, one of two BRCA (BReast CAncer) genetic mutations commonly found in Ashkenazic Jews. The BRCA genes lead to an increased risk for breast, ovarian, and pancreatic cancers, as well as a smaller increased risk for several other cancers, including melanoma. My father began undergoing regular screenings for BRCA-related cancers, but he also understood what this gene meant for his kids: There was a 50 percent chance that my siblings and I were also carriers, and at risk for these hereditary cancers, a knowledge that weighed on him deeply. He wanted to protect us and help us live long, full, healthy lives in the best way he knew how, and so he encouraged us to get tested.
We were three for three. All carriers.
AS the genetic counselor continued speaking, I diligently took notes on the test results sheet. She told me that I’d need to be screened regularly for these cancers and that I should plan for prophylactic surgeries. We got up to leave, and I placed the papers in the folder she’d handed me, then, inspired, scribbled on the front of the folder: “BRCA is a brachah.” The similarity between the words seemed so obvious to me. This gene called BRCA was in fact a BRaChA, a gift Hashem gave us to enable us to choose life and make choices to protect our health.
That doesn’t mean that I wasn’t overwhelmed. I had met my chassan just nine weeks earlier, we’d been engaged for all of three weeks — and now we were being given so much heavy information.
In the coming weeks, as doctors assessed my family history, I learned that I’d need to have a full hysterectomy by the age of 35, and was advised to have a double mastectomy the following year. Every family’s timeline is different, but since my cousin had passed away from ovarian cancer at such a young age — she’d been diagnosed at just 32 — our risk increased at a younger age than most.
My sister was 35 at the time, and she did these procedures immediately. I, on the other hand, had eight years until I turned 35. Eight years to get to know my soon-to-be husband, build my family, and mentally prepare for this procedure.
Our wedding that fall was perfect. The atmosphere, the simchah, the people — it was a dream come true. My mom held my hand at the badeken and my dad sang me down the aisle. Even just thinking back to that day, I can’t help but smile.
A year later, we welcomed our first child, a healthy, happy baby boy. Our life was good.
That summer, while leading a travel program in Israel, I FaceTimed my father to ask him a question. My precious little baby had a rash, and Dr. Zaide would surely have the answer as to what to do.
When my father answered the call, though, he was lying in a hospital bed. My mind began racing and panic set in. My mom leaned into the screen and they both assured me that everything was fine. He had fallen and the doctors wanted to examine him to make sure he was okay. I breathed a sigh of relief, told him I would check in shortly, and ended the call. My campers had already been loaded onto the buses as our activity was over, and they were waiting for me to leave.
But I couldn’t move. I had a pit in my stomach. I just knew that something was wrong. I turned away from the bus and cried, alone, looking out over Harei Yerushalayim. Recognizing my need to return to my responsibilities, I wiped my tears and boarded the bus.
By the end of the day, we got the news: My father had Stage IV pancreatic cancer. He was 67 years old. My father underwent aggressive treatments, some experimental treatments specific for BRCA carriers, which granted him 15 additional months with his family. I have endless hakaras hatov to Hashem for that gift of time.
During that time, we welcomed our second son. Baruch Hashem, my father was strong enough to travel for my son’s bris and serve as the sandek. A few months later, between Rosh Hashanah and Yom Kippur, my father was niftar.
During the eight years following my marriage, I lost my father, grandmother, and three uncles. Two of them — my father and his brother — were carriers of this same BRCA gene. My father’s other brother passed away from pancreatic cancer one month after him, and though he hadn’t tested for the gene, it’s assumed he too carried it.
Hashem took impeccable care of me over those eight years. We were blessed with five perfect, healthy, hilarious, and beautiful children kein ayin hara, each named for immediate relatives we’d lost. Throughout this ordeal, my children were my nachas and my nechamah.
I continued to go for regular screenings for breast and ovarian cancer every three to six months. Ovarian cancer is very challenging to screen for, but I did whatever preventative tests the doctors knew of, even if they were deemed “not the most effective.”
My life was busy and full, and appointments became a part of my routine. My team of doctors were wonderful, holding my hand throughout these years, crying with me through my losses, and guiding me after my most trusted medical advisor, my father, was no longer there to advise me.
Before I knew it, I was celebrating my 35th birthday with my dear husband, my four sons, and my four-month-old daughter in my arms.
Over the years, we’d discussed the various options available to me. And there were options. I could choose an oophorectomy, salpingectomy, or hysterectomy. But all of these options meant ending my ability to naturally have children. (One would allow me to do IVF, but I would still need to come back and do the full hysterectomy several years later.) It was a lot to consider.
I sought advice from medical professionals all over the country, from experts who treat BRCA patients exclusively and from Sharsheret, an amazing organization that supports Jewish women who carry these genes. The message was absolute and unanimous: I needed to move forward with my procedures. I chose to take the most preventative, cautious route — a hysterectomy — but I was scared and sad.
I also felt thankful — thankful and truly grateful for the abundance of brachah that Hashem had shown me. When we spoke to rabbanim regarding these procedures, each one asked how many children we had and if we felt like our family was complete. I never knew how to answer that question, other than to say how blessed I felt to have been zocheh to the beautiful family we had built.
Now, though, my medical team was pushing me to schedule my hysterectomy for the near future. My emotions were all over the place. I sat in my doctor’s office, vacillating. Maybe we could postpone the surgery for a bit longer?
My doctor, a generally soft-spoken man, looked at me intently. “Your kids need you more than you need to have more kids.”
Those words — which I’ve played over and over again in my head — shifted my perspective. I wasn’t choosing to give up a piece of myself or our future. I was choosing to live. I was choosing to go through something unnatural and uncomfortable, something scary and surreal, so that b’ezras Hashem I would be there for my children.
Sitting in his office, I closed my eyes. I pictured myself sitting at parent-teacher conferences, rushing to make it to carpool, snuggling with my children at bedtime. I smiled as I remembered the hug and kiss my little boy gave me that morning before he went to school, waving as he walked off by himself into the building.
Each of these moments was a treasure, and I didn’t want to miss a single one of them. I wanted to be there to take my boys shopping for their first pair of tefillin, to cook their favorite foods when they come home from yeshivah, to learn with my daughter for her bas mitzvah, to help pick out her wedding gown. I wanted to watch my children build homes of their own. I wanted to be called “Bubbe.” I realized that this surgery was the hishtadlus to help me actualize these dreams.
I called my rav to ask him about the surgery. Without batting an eyelash, he told me to do the procedure as soon as possible. “This is pikuach nefesh. If your doctor says age 35 is the magic number, you do the surgery at 35.”
With tears in my eyes and an emptiness in my womb, we were ready to move forward. The procedure was scheduled for April 26, 2021. Pesach Sheini, the day for second chances.
These little kisses from Hashem were everywhere. On the Erev Shabbos before my surgery, a meshulach came to our door. My husband usually speaks with meshulachim, but as he wasn’t available, I answered the door. The meshulach was clearly someone special, with a deep chein and anivus. I wrote him a check.
As he turned to leave, on a whim, I asked him for a brachah. He opened his phone and told me to write down the names of five tzaddikim and light candles in their name before my surgery. They would advocate for me and protect me, he said. My husband made sure I got a brachah from Rav Chaim Kanievsky ztz”l.
The night before my surgery, I saw a post in a BRCA support group from a woman who was scheduling her hysterectomy and wanted to know how it would affect her nursing, a major concern of mine. Someone commented, as if speaking directly to me, that she had her procedure when her daughter was five months old — just like mine was — and it didn’t affect her nursing at all. I finally felt at ease.
That night, my rav called to check in. This is the same rav I took my husband to meet when we were dating, the same rav who gave my father chizuk as he battled pancreatic cancer, the same rav who counseled us through challenges we faced over the years, and the same rav who helped us with the impossible task of formulating the words for my father’s matzeivah.
He called me and said, “Erin, I’m so sorry. I know tomorrow is going to be so hard, and I’m so sorry that you have to go through this. You should have nachas from your beautiful family, and health, and everything should go smoothly. Remember your brachos.” I cried through my “Amen”s.
That night I hugged my children as I put them to bed. For a brief moment, I felt at peace. I looked upward and thanked Hashem for these gifts — for each of my children, for the gift of knowledge, for being able to perform this surgery as an elective procedure, and for giving me loved ones and mentors who remind me how lucky I am. I thanked Hashem for the gift of life.
WE were up early the next morning. My mother had come to town so that she could help with the kids while I would be in recovery. She’d woken up to see us off, and pulled me aside to give me a brachah before I left. My dad had always been the one to give brachos in our family, but since his passing, my mom had stepped into this role. She kissed me goodbye and we headed to the hospital.
I opened my siddur to daven on the way there.
I cried as I sang Adon Olam and said the words, b’Yado afkid ruchi, words that my father z”l shared as his mother’s mantra, the words that I recited with him each morning and night as he lay in his hospice bed, no longer able to daven the full davening. Hashem li v’lo ira — Hashem is with me, I have nothing to fear. No matter what happens, Hashem has my best interest in mind and is with me every step of the way.
I then said Elokai Neshamah, reminding myself of the very pure and perfect neshamah Hashem has given me and my duty to protect the body that houses it. I remembered saying Elokai Neshamah after a miscarriage. All I could think about in that moment was the neshamah that Hashem had entrusted to me and then chosen to take back. It was painful and hard to comprehend. Now, though, I focused on the five beautiful neshamos Hashem had allowed me to bring into This World and the choice I was making to allow myself to continue to be there for them.
I held back tears as I recited the morning brachos and said the brachah of She’asani Kirtzono. Hashem made me as a woman, with this specific gene, that impacts me more profoundly as a woman, but this is Retzono, His Will, and I am doing my hishtadlus.
I am blessed.
IN pre-op, I had the nicest, brightest nurse, Caitlyn. She told me that I have the dream team performing my surgery and that if she or anyone in her family would ever need this procedure, this is exactly whom she’d choose to do it. Caitlyn asked me who was staying with my kids, and when I told her my mom was with them, she told me how refreshing it is to have a patient come in for this surgery whose mother was still alive and hadn’t died of this cancer.
The time came to go into surgery, and before I could even realize what was happening, the nurse gave me something that put me to sleep almost immediately.
When I woke up, I was in the recovery ward. The post-op nurse helped me sit up, then told me the surgery had been a success. I noticed the five dime-sized incisions, sealed with surgical glue. With all of the advances in modern medicine, I would be going home just hours after my procedure, and I’d be up and about within a few days. For such a life-altering procedure, the recovery was surprisingly easy. My doctor shared that all of my biopsies were free of cancer and pre-cancer. Baruch Hashem. The timing had been right.
I took a deep breath and tried to register my emotions. For the first time in weeks, I didn’t feel knots in my stomach. In fact, I felt a deep sense of menuchas hanefesh, an unparalleled calm that took over my entire being. In that moment, I had total, complete clarity that I’d done the right thing for myself, for my future, for my children.
My eyes welled with tears. Through my grogginess, I could envision myself dancing at my children’s weddings. It was the most beautiful image I’ve ever seen.
BRCA Fast Facts
Prepared by Sharsheret, an organization that supports Jewish women and families living with or at increased genetic risk for breast or ovarian cancer.
• Mutations in BRCA1 and BRCA2 are more common in the Ashkenazic Jewish population. The risk is 1 in 40, ten times higher than the general population.
• Both men and women carry BRCA mutations. Men have a lower risk for cancer than women, but have an increased risk for prostate, melanoma, male breast, and pancreatic cancer than other men.
• Since men are less likely to develop cancer than women, a family history of cancer may not be visible when evaluating the family history.
• Mutations in BRCA1 and BRCA2 can be inherited from either parent, so it’s important for families to be open about their medical history.
• The highest risks for BRCA carriers are for female breast cancer, with risks ranging between 50 percent to 80 percent. Ovarian cancer risks are between 12 percent and 55 percent.
• Anyone with Ashkenazic ancestry and a family history of breast, ovarian, pancreatic, or prostate cancer meets medical guidelines for cancer genetic testing.
• There are hereditary cancer genes outside of BRCA1 and BRCA2. These include, but are not limited to, ATM, CHEK2, PALB2, and genes associated with Lynch syndrome. Most testing nowadays includes a panel of genes.
• Genetic testing has become much more affordable. Even without insurance, one can get a test for about $250.
Who’s At Risk?
If one or more of the following apply to you, you may be a carrier of BRCA1 or BRCA2.
• you have one case of pancreatic cancer in your family history
• you have one case of ovarian cancer in your family history
• you have two-plus cases of breast cancer under age 40 in your family history
• you have a relative who is BRCA positive
If you have questions about hereditary cancer, you can contact Sharsheret at firstname.lastname@example.org, or directly contact Sharsheret’s genetic counselor at (201) 661-6867 by call or by text. Sharsheret also supports women who are diagnosed with breast or ovarian cancer, and those who care for them. You can contact their clinical team at (866) 474-2774 or email@example.com. Sharsheret’s services are confidential and free of charge.
(Originally featured in Family First, Issue 792)
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