Three days after starting her new job at Healthline back in 2015, Sheryl Rose found out that her sister had breast cancer. A BRCA test informed her of her own risk of developing breast cancer or ovarian cancer, and she made the decision to go ahead with a preventive oophorectomy and mastectomy. She wrote this story as she was recovering from surgery.
I was going in for a regular yearly checkup with no concerns. I was in good health and had had few to no issues to this point. I’d been going to my gynecologist, Dr. Ilene Fischer, for years. But that day she said something that would forever change my life: “Have you ever been tested for the BRCA gene?”
I was fully aware of what the BRCA gene is, and that I fit the profile of someone who would be at risk for a mutation. There’s a history of breast cancer in my family and I am an Ashkenazi Jew. While Angelina Jolie may have put the BRCA gene on the map, I’ve known about it for years. But as much as I thought I knew, the truth is, I knew nothing.
“Well, no, but my mother was tested years ago and she was negative, so I know that means I can’t have it, right?” Wrong.
You can get the mutation from either your mother or your father. Our known history was all on my mother’s side of the family, so I felt the test was unnecessary — but I consented. Since it was just a simple blood test and covered by insurance, it seemed worth it to check.
A week and a half later, I got the call: “You’ve tested positive for the BRCA1 mutation,” she said. The rest was all a blur. There was a list of doctors I needed to go see and tests I needed to schedule. I hung up the phone in tears.
I’m 41 and single, I thought. I will now need to have a hysterectomy, and will never have the chance to carry my own children.And I’d at least have to consider a mastectomy. But, once again, wrong.
After the hysteria had passed, I made my first appointment with an oncologist. The doctor did think it was strange that my family history of breast cancer was on my mother’s side but that my mother had tested negative.
She wanted my father to come in, but we had difficulty getting his test covered with Medicare. It was eventually decided that, since my mother had tested negative, the gene had to have come from my father.
She turned to me and said: ‘Please don’t get cancer, do whatever you have to do, and don’t wait. We are ticking time bombs.’”
My sister, Lauren, joined me for the consultation and we asked a million questions. The best news to come out of the meeting was that I was wrong about the hysterectomy. It turns out that a BRCA1 mutation puts you at risk for ovarian cancer, not uterine, so I would only need to have an oophorectomy to remove my ovaries. And since I had harvested my eggs a few years back, I could still carry children via in vitro fertilization (IVF). That was a tremendous relief.
“I have breast cancer”
While we were there, we also asked if there was any hurry on my sister getting tested. If I had it, there was a 50 percent chance that she had it, too. She was thinking about putting off testing until after my niece’s bat mitzvah six months later. The doctor thought waiting would be fine. The breast surgeon at her practice thought so too, but offered to do a breast exam while she was there.
The nightmare continued. They felt a lump in her breast and immediately had it biopsied. I then received a second shocking call.
“I have breast cancer,” my sister said. I was floored. It was my third day working at Healthline, and suddenly my whole life was changing. She had a clear mammogram four months ago, and now she has cancer? How can this be?
Doctors were recommended and additional testing was done. Lauren had one estrogen receptor-positive (ER-positive) tumor. The doctors felt she probably wasn’t a BRCA1 carrier because most women with BRCA1 mutated breast cancer get triple negative cancer, especially when they’re diagnosed under the age of 50.
She ended up having an MRI and two additional tumors were found: triple negative, much smaller, but more aggressive and much more connected to BRCA. We learned that she was also positive for a BRCA1 mutation, and thus our BRCA sisterhood story continued.
“She couldn’t avoid this cancer, we didn’t know then. But I was going to take matters into my own hands. It would be hard, but it would be on my own terms. I would do it for her; I would do it for myself.”
The focus shifted entirely to my sister. Scheduling her mastectomy, choosing her oncologist, deciding on her plastic surgeon, and selecting a course of treatment all needed to happen within two weeks. It was a whirlwind.
The night of Lauren’s mastectomy, I saw her being wheeled into her room at the hospital. She looked so small and helpless. My older sister, my rock, was lying there and there was nothing I could do for her.
And am I next? I was already leaning that way. In that moment, I knew I would need to go forward and have the mastectomy, too. She couldn’t have prevented this cancer, because we didn’t know she had the BRCA mutation until it was too late. But I was going to take matters into my own hands. It would be hard, but it would be on my own terms. I would do it for her; I would do it for myself.
Taking control of my life
My sister’s recovery and subsequent treatment continues. Her body and blood scans are clear, and by all accounts she is now cancer-free. However, because her cancer was triple negative and so aggressive, chemotherapy and radiation were both recommended.
She started her first course of chemotherapy and it was worse than we had anticipated. Nausea, dry heaving, exhaustion, pain, and all the rest were a daily occurrence. I knew it wouldn’t be a cakewalk, but I wasn’t expecting this.
She turned to me and said: “Please don’t get cancer, do whatever you have to do, and don’t wait. We are ticking time bombs.”
“I lay on the table and looked into my surgeon’s eyes. One tear fell and she wiped it away with the gown that was covering me. I wondered if I’d ever look the same. I wondered if I’d feel the same.”
I wondered if she was being dramatic because of what she was going through, but I knew in a way she was right. Time wasn’t on my side. I knew she’d be a survivor, but I had the chance to be a “previvor.” I decided to take whatever steps necessary to survive this mutation before anything really bad could happen.
And so, I began investigating. I met with breast surgeons, plastic surgeons, and a gynecological oncologist. I had an MRI, a mammogram, a sonogram, a pelvic ultrasound, and countless other blood tests. As of now, I do not have breast or ovarian cancer. I was thorough and sought second opinions, but knew what I had to do.
Women without a BRCA mutation have a 12 percent chance of developing breast cancer and a 1.3 percent chance of developing ovarian cancer, according to the National Cancer Institute. If you test positive for BRCA mutation, your risk increases as much as 72 percent for breast cancer and 44 percent for ovarian cancer.
Your doctor will recommend that you have a double mastectomy, meaning both breasts are surgically removed, and an oophorectomy, meaning both ovaries are surgically removed. Having these surgeries is the only way to ensure that you will not get these cancers.
On the day of my first surgeries, I waited patiently to be taken into the operating room. I was calm and collected, maybe calmer than I had ever been. I lay on the table and looked into my surgeon’s eyes. One tear fell and she wiped it away with the gown that was covering me.
I wondered if I’d ever look the same. I wondered if I’d feel the same. Would I be thrust into medically induced menopause and never feel like a young woman again?
I shut my eyes and remembered that the only thing that mattered was that I was taking control of my life. When I opened my eyes, it was over.
And so I’m sitting here writing this all down, recovering from my first surgeries. Just a few days ago, I had my laparoscopic oophorectomy and a breast reduction — part one of my mastectomy.
The actual mastectomy will come later, but for now, I’m focused on healing. I’m doing great. I feel empowered. I know my doctor encouraging testing for BRCA1 saved me and saved my sister. Whenever I hear about people putting off testing, or their next mammography, or anything they should be doing, it angers me.
Do I wish I didn’t have this gene? Of course. Do I wish my sister never got breast cancer? Absolutely. But I now know that knowledge truly is power, and that action will continue to save our lives.
There was a time in my life when I would have looked at my situation and thought I was unlucky, even cursed. My mindset has changed. My life went from ordinary to chaotic, but if my story convinces one more person to get tested for BRCA, then I will feel truly blessed.