Why I Had My Breasts and Fallopian Tubes Removed Due to a Gene I Inherited From My Dad

In May of 2017, I sat on the beach, halfway around the world, with salt in my hair and sand between my toes, watching as the sun set beyond the water’s horizon. Sunsets are magical in Sanur, Bali. In that peaceful moment I finally came to a decision that had been troubling me for over two years. I was going to have a preventive mastectomy.

Rewind to three years earlier, when I heard my mom’s voice on the phone say: “It’s cancer.” My dad had stage 4 colon cancer. My dad’s mother had passed away from breast cancer in her early fifties. My dad’s doctor took that as a cue to test my dad for genetic mutations that might predispose my family to certain cancers.

My dad’s test came back positive for a BRCA1 gene mutation, a gene widely associated with breast cancer, but that can contribute to heightened risk for a number of other cancers as well.

A month later, a surgical oncologist removed a softball-sized tumor from his colon. A few weeks after that, he began chemo.

My father was terminally ill from the beginning. It was difficult to process the news at the time, but even more difficult was knowing that the genetic mutation he carried would alter the life path for all of us. I had to be tested for the gene too. In my gut, I knew I carried it. And, well, you wouldn’t be reading this now had I tested negative.

My Increased Breast Cancer Risk

Almost everything I researched or was told about regarding the BRCA1 mutation was related to the increased risk for breast cancer. Mammograms. MRIs. Self-exams. Mastectomy. Reconstruction. There are so many options to minimize the risk or check for breast cancer. So that’s where my focus was too — at first.

On May 18, 2018, I underwent a preventive bilateral mastectomy. I called my dad from my hospital bed with the good news of no precancerous cells in my breast tissue. A week later, he passed away — four years after first hearing about the BRCA1 mutation. It was confirmation, albeit in the worst way possible, that I had made the right decision to have surgery.

Soon I would learn that this was only the beginning of my journey to reduce my increased cancer risk.

RELATED: My Genetic Test Came Back BRCA Positive — Here’s How I’m Coping

Screening for Ovarian Cancer: An Imperfect World

While BRCA1 and BRCA2 mutations were first linked to breast cancer, more research revealed that they were also linked to an increased risk of ovarian cancer, cervical cancer, uterine cancer, pancreatic cancer, colon cancer, stomach cancer, and melanoma, amongst others.

While I was aware of my risk for ovarian cancer, I was stunned after recovering from my mastectomy to realize that there is no effective way to screen for cancer in the ovaries. The few surveillance options that do exist, as noted by Memorial Sloan Kettering Cancer Center, are limited and not all that reliable. A CA-125 (carbohydrate antigen for ovarian cancer) blood test can check for elevated markers of cancer activity. But it’s not a very specific test. Having your period, for instance, can also cause the number to spike.

A transvaginal ultrasound to scan the ovaries for growths can detect abnormal growths, but it’s not easy to biopsy this way. And fighting insurance to cover them, even preventively, is a whole other problem.

Nor is being aware of early signs all that helpful. The symptoms of ovarian cancer are common and often overlooked or confused for things like irritable bowel syndrome or even pregnancy. Unsurprisingly, most diagnoses of ovarian cancer are in the later, more advanced stages, when it’s more difficult to treat, according to the National Ovarian Cancer Coalition. And unlike breast cancer, ovarian cancer research is frustratingly underfunded. Let’s face it: The stats, per the National Cancer Institute, around ovarian cancer are scary.

Deciding to Remove My Fallopian Tubes (Salpingectomy)

During my first ovarian cancer surveillance appointment last September they found a small mass on my left ovary. I anxiously waited a month to get another $900 ultrasound to see if it would disappear on its own, as many cysts do. When it was repeated, however, the mass was still there. My doctor, an amazing gynecologic oncologist, was hopeful the mass would be benign, but couldn’t be sure without exploratory surgery.

Coincidentally, my exchange surgery (in which a surgeon switches out your expanders for implants) was a few weeks away. We decided that my gynecological oncologist would join the surgery to remove the mass, and remove my fallopian tubes while she was at it.

And so, two days before my 31^st birthday, I had my surgery. I woke up in recovery with new foobs (fake boobs), no tubes, and to the news that the mass was benign.

Why go for the tubes and not the ovaries? Current research, detailed in an article published in February 2017 in OncoLog, shows that most ovarian cancers found in BRCA1 mutation carriers originate in the fallopian tubes. Although it’s a new area of research, it looks like removing the tubes (a salpingectomy) instead of removing both the tubes and the ovaries (salpingo-oophorectomy), might be an effective way to minimize ovarian cancer risk.

Leaving the ovaries for now also had the advantage of allowing me to keep producing hormones, thus giving me a reprieve from early menopause, hormone therapy, lack of sex drive (or none at all), early heart disease, and onset of neurological problems (according to previous research), all of which are a given or a possibility when removing the ovaries. I’d also still be able to have kids, albeit with fertility treatment to facilitate the process, since my tubes were gone.

It’s important to note, that not all doctors are comfortable solely removing the fallopian tubes and may eventually recommend, depending on age, a full hysterectomy or a salpingo-oophorectomy.

RELATED: Ovarian Cancer Resources

Helping Others Know Their Options

In the time since my surgery, I’ve talked to a lot of women who carry a BRCA mutation. Few seem to know that salpingectomy is an option to minimize their ovarian cancer risk. Many have expressed how emotionally jarring it can be to be told they will go into early menopause, or feel rushed to decide whether they want to have kids sooner rather than later. Deciding between either surgery is a huge decision to make, but it’s been especially difficult navigating this as a single woman in my early thirties.

I am very thankful that my doctor presented the option to remove my fallopian tubes and delay removing my ovaries, which she recommended I do between the ages of 35 and 40. I know I wasn’t ready to face medically induced menopause just yet. And it gave me peace of mind to minimize my risk and have more time to decide whether I want to have kids or not, though maybe not the old-fashioned way.

My BRCA journey has been a roller coaster of a ride, filled with plenty of unexpected twists and turns. The loss of my father was the biggest twist of all. Even then, were it not for his diagnosis, I wouldn’t have been able to take charge of my health as I have.

I encourage those with a BRCA mutation to talk to their doctors about all their options. This mutation may be life-changing, but it doesn’t have to call all the shots.