I Had My Fallopian Tubes Removed at Age 38 to Lower My Risk of Ovarian Cancer
Nicole Cundiff had preventive surgery after her mother died from the disease. Here's what it was really like.
I’m the oldest of four girls, and my sisters and I had such a close relationship with my mom, Colleen Drury. She was the core of our family. Even after I moved away from my hometown of Phoenix, Arizona to college in Iowa and then to Dallas for law school, my mom was deeply involved in my life. Eventually I moved back home to Phoenix to start putting down roots. I was getting ready to take the bar exam in Tucson while my NFL kicker husband was at training camp, and my mom drove down to keep me company.
I was really stressed out, so we were eating takeout and watching movies in bed. But she kept having to get up to go to the bathroom, and she could barely eat. She thought maybe it was because of stress or her recent busy travel schedule. She also thought it could have to do with her age, since she had entered her 50s. She decided to make some appointments.
Her symptoms became progressively worse, especially her bloating. She started to look as pregnant as I was at seven months. She told doctors about her bloating and discomfort, but no one thought much of it. There was no sense of urgency. It was crazy how fast her health physically and visibly declined from one week to the next. She declined so much that she couldn’t even get out of bed.
My mom had a background in nursing, and it was clear that she knew something was really wrong. We have a friend who works in the ER at St. Joseph’s Hospital, and he heard what was going on with my mom. He called her on his day off. “This doesn’t sound like you,” he said. “Meet me at the ER, and I’ll walk you through myself, and hopefully we can get to the bottom of why you’re not feeling well.”
A radiologist he was friends with did the CT scan. The radiologist had never met my mom, but he was crying over the scan. There was a huge tumor about the size of a football fusing her ovaries together.
The diagnosis of stage 3C ovarian cancer was shocking. My mom knew something was wrong, but she had never considered ovarian cancer. We didn’t have a family history of it, and she'd had a hysterectomy 20-something years before. It never crossed her mind that there could be something gynecological that was wrong. She thought maybe it was pancreatitis or even colon cancer.
Throughout the next few days and weeks of surgery, chemotherapy, and hospital visits, my sisters and I never left her side. This was in 2007, and insurance companies weren’t all that friendly yet about paying for genetic testing, but we started to learn that there are genetic links with ovarian cancer. My mom wanted us to be informed. She wanted to make sure that we never went through what she was going through.
She tested negative for BRCA1 and BRCA2 mutations, thankfully. Those genes really do increase your risk, but there are many others we still don’t know about. Our mom started saying things like, “Whatever you can do not to have to go through this, you girls need to do it.” She had some regret in hindsight; ovarian cancer seemed so obvious after the diagnosis because all the signs and symptoms were there. She went to three doctors, and none of them had ovarian cancer on their radar.
My mom had great medical care and a support system in all of us, but she was always so worried about other women who didn’t have those things. We started raising money for the University of Arizona Cancer Center, where she was being treated.
Fast-forward a couple years, and my husband was playing football for the Baltimore Ravens. The team gave the players an opportunity to start their own nonprofit. We decided to start Colleen's Dream Foundation to give young investigators grants for ovarian cancer research. Our lawyer thought it could take a year or two to get our 501(c)(3) designation as a nonprofit, but it was only a matter of weeks before we got the green light. Just a week after that, we learned there was really nothing more doctors could do for my mom.
She decided to quit her job, and for the next couple of months we brainstormed about the foundation. She helped pick the logo and write the mission statement. It made her feel like she would be leaving a legacy and making a difference for other women. We knew her time was short at that point, so we didn’t get too deep into the work. She died in 2013, and then the foundation became everything to us. It gave us a way to channel that grief into something positive.
Throughout my mom’s fight, I would visit with my own gynecologist, who would ask about my mom. I knew she was never going to take her eye off me now; I was at an elevated risk of ovarian cancer because my mom had it. My doctor would perform ultrasounds, blood tests, or just give me extra time to talk about what was going on with my own body. I knew at some point I would want to try to do something to decrease my risk, so that was always part of our conversation. It was always about what was I going to do and when was I going to do it.
I’m 38 now, and I have three kids. I don’t see us having another. It started to feel like it was time for me to take a more serious look at my options. My mom had told us so many times to be proactive. I woke up one morning scared about how long it had been since I’d seen my gynecologist and made an appointment right away.
I could remove my ovaries, have a partial hysterectomy, or remove my Fallopian tubes—or all three. I had considered doing all of it, but I felt uneasy about the hysterectomy, and if I left my ovaries and my husband and I did get some crazy idea to have another kid, we could do in vitro. Removing my Fallopian tubes—where experts now think many ovarian cancers actually start—was kind of a no-brainer, a way of maintaining my fertility and reducing my risk.
I was worried about the surgery and the recovery because I’m a pretty busy person, but it was so easy. I came home from surgery in June on Motrin and felt fine. I still laid low for a while—doctors suggest about two weeks—but the pain was minimal. It felt like a weight had been lifted off my shoulders. Something that had been hanging over my head for a long time was now gone, and I knew my mom would be happy about it. My sister Michelle will undergo the same surgery later this month.
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Colleen’s Dream Foundation just gave its biggest grant to date. It's to a clinical trial that will be named after my mom and will impact young women who have an aggressive form of ovarian cancer.
I want other women to know their family history; just ask Grandma at Thanksgiving how her parents passed away. Understand the health of the people in your family tree, and stay aware of the signs and symptoms of ovarian cancer. Had we known, my mom would have brought up ovarian cancer at her doctor appointments. We want to make sure what happened to my mom doesn’t happen to other women.