Inherited Ovarian Cancer Risk: Breaking the Silence on Family History and Prevention

At the National Ovarian Cancer Coalition (NOCC), we often hear the same story.

Symptoms that were easy to dismiss. Questions that went unanswered. Family histories that were never fully discussed.

Ovarian cancer is often described as a disease that moves quietly. It develops in places we cannot see, spreads in ways we cannot feel, and too often goes undetected until it has already advanced.

But there is another kind of silence surrounding ovarian cancer. It exists in the conversations we do not have, the family histories we do not fully know, and the risks we do not realize can be inherited.

Breaking that silence is often the first step in understanding your risk and what you can do about it.

In a recent conversation with gynecologic cancer surgeon Dr. Kara Long, we explored both the science behind ovarian cancer and the personal experiences that shape how we understand risk today.

Why ovarian cancer is often diagnosed late

One of the most difficult realities about ovarian cancer is that it is rarely detected early. This is not because people are ignoring symptoms. It is because of how the disease actually develops and spreads in the body.

Most ovarian cancers begin in the fallopian tubes, not the ovaries. From there, cancer cells can spread quietly throughout the abdomen before causing noticeable symptoms. This process can happen long before anything appears on imaging or blood tests.

Dr. Long describes it this way:

“It’s almost like if someone stuck a wet paintbrush in your purse… at the end of the day, you open it up and there’s paint on everything.”

By the time symptoms such as bloating, abdominal discomfort, or difficulty eating appear, the disease is often already advanced.

This is also why current screening tools are not effective for early detection. Unlike breast or cervical cancer, there is no reliable screening test for ovarian cancer today.

That makes awareness especially important. Understanding your body, recognizing persistent symptoms, and seeking medical guidance when something feels off can make a meaningful difference.

The role of genetic testing and family history

While screening remains limited, one of the most powerful tools we have today is genetic testing.

Research shows that approximately 1 in 4 ovarian cancer cases is linked to an inherited genetic mutation, such as BRCA1 or BRCA2. These mutations can significantly increase a person’s risk, but they also provide an opportunity to act.

Understanding your family history is a key first step. Conversations with parents, siblings, and extended family members can reveal patterns that may not be obvious at first.

Dr. Long emphasizes how impactful this knowledge can be, not just for individuals, but for entire families:

“It’s the biggest gift you can give your family members… this information that may save their lives.”

When one person is identified as having a genetic mutation, it allows other family members to get tested as well. This process, known as cascade testing, can help multiple people understand their risk and take preventive steps.

Even if your family history is unclear or incomplete, genetic testing may still be an option. Today, testing is more accessible than ever and can often be done through a simple blood or saliva test.

Options that can help reduce risk

While no approach can fully prevent ovarian cancer, there are meaningful steps that can significantly reduce risk, especially for those who understand their personal and family history.

For individuals with known genetic mutations, risk-reducing surgery is often recommended. This may include the removal of the fallopian tubes and ovaries, which can significantly lower the chance of developing ovarian cancer.

For those at average risk, newer strategies are also emerging. One of the most promising is the removal of the fallopian tubes during other planned surgeries, such as a hysterectomy or surgery to prevent pregnancy.

This approach is based on growing evidence that many ovarian cancers begin in the fallopian tubes. By removing them, it may be possible to reduce risk before cancer has a chance to develop.

For many, the decision to take these steps has not always felt straightforward. Concerns about fertility, surgical menopause, and long-term side effects have made it difficult to move forward.

But care has evolved, with a stronger focus on supporting patients through these changes and protecting quality of life.

“We’ve gotten much better at treating surgical menopause… patients do have better options now.”

Today, there are more supportive options available, including hormone therapy and individualized care plans that prioritize both health and quality of life.

A personal story that reminds us why this matters

For Dr. Long, this work is not just professional. It is deeply personal.

As a medical student, she learned that her mother had advanced ovarian cancer after months of unexplained symptoms and visits to multiple doctors. It was a moment that changed everything.

Years later, genetic testing revealed that her mother carried a hereditary mutation. That discovery ultimately helped Dr. Long and her family understand their own risk.

Rather than viewing this information as something to fear, she sees it as a source of strength:

“I think it is a superpower to know about your own risk, because then you can do something about it.”

Moving forward with awareness and action

For too long, ovarian cancer has existed in silence. In symptoms that were minimized. In stories that were not shared. In risks that were not fully understood. But that is changing.

Reducing ovarian cancer risk is not one single step. It is a series of informed choices.

It begins with asking questions, seeking information, and advocating for your health.

You are not alone in this journey. Whether you are newly diagnosed, at risk, or supporting someone you love, there are resources, programs, and a community ready to support you.

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