If you have recently been diagnosed with ovarian cancer, you will likely experience disbelief or have lingering questions: Why me? How long have I had it? Why didn’t I know earlier? The truth is, people can often have ovarian cancer for several years without knowing.

Having a delayed diagnosis is not your fault: Ovarian cancer is still one of the most difficult types of cancer to find and treat. Here’s why someone could have ovarian cancer for years without realizing it, including why early detection isn’t possible in many cases.

Symptoms of Ovarian Cancer Are Vague

People with ovarian cancer can be asymptomatic (showing no symptoms) for years. When early symptoms of ovarian cancer show up, they often seem like “normal” things that occasionally happen to anyone. For example, some people experience bloating, constipation, lower back pain, and stomach pain. Because these symptoms are shared by other common, benign complaints, it is easy for the signs of a serious issue to go unnoticed. Most people who are diagnosed with ovarian cancer don’t notice these symptoms until they have reached late-stage disease.

It may only be in later stages of ovarian cancer that people start to notice the bothersome red-flag symptoms, including more severe forms of those listed above as well as weight loss and urinary problems.

Ovarian Cancer-Screening Tools Are Limited

Doctors use cancer screening to identify and treat early-stage cancer before it spreads to other parts of the body and causes symptoms. Common cancer-screening tools include regular mammograms to check for breast cancer and pap smears to check for signs of cervical cancer. Unfortunately, there aren’t good screening tests for ovarian cancer.

Consequently, only a fraction of ovarian cancer cases (about 1 in 5) are caught in early stages.

Screening Those at High Risk

Only people considered at a high risk of ovarian cancer are regularly screened and tested with available options. This group includes people with high-risk genetic mutations such as BRCA1 or BRCA2 or a family history of other cancer syndromes such as Lynch syndrome. Other risk factors for ovarian cancer include taking hormone therapy after menopause.

Those considered at a high risk of ovarian cancer might undergo genetic testing to detect potential gene mutations that could indicate cancer. Some people in the high-risk category may even be advised to undergo a hysterectomy (removal of the uterus) with the removal of the ovaries to help prevent possible ovarian cancer.

Ovarian Cancer Diagnosis

Whereas screening is intended to detect cancer before it causes symptoms or issues, diagnosis refers to when a doctor tries to determine the causes of a person's existing symptoms. Many tests used to diagnose ovarian cancer and monitor people who the condition are not reliable screening tests.

Blood Tests

The main blood test related to ovarian cancer checks for a protein called CA-125. This protein is found in people with ovarian cancer. However, studies show that finding higher levels of CA-125 in the blood is not a good diagnosis or screening tool because other conditions (such as endometriosis, pelvic inflammatory disease, and even pregnancy) can also raise CA-125 levels. Although elevated CA-125 levels could indicate cancer, this test is more useful for monitoring the progress of someone undergoing treatment for ovarian cancer.

Physical Examination

Pelvic exams are usually done during regular women’s health checkups. Ovarian cancer is usually in a very late stage if it can be directly felt on a physical exam, making the pelvic exam an ineffective screening method for ovarian cancer.

Scans

Transvaginal ultrasounds are often one of the first imaging methods used to try to look at the ovaries and fallopian tubes for any signs of a tumor. However, these ultrasounds can’t distinguish whether or not a mass is cancerous. Some people may also find the scan invasive.

Other scans, such as CT scans, can be more accurate than ultrasounds, but the scans subject people to doses of radiation. Using these scans as regular screening tests would put people at risk of exposure to harmful amounts of radiation, and so CT is not used in women at average risk of ovarian cancer. Although CT scans are good at looking for large (late-stage) tumors, CT is not as good at detecting smaller tumors such as those in earlier stages.

The Future of Earlier Detection

The good news is that cancer research and cancer care have advanced significantly over the past few decades. Now, more than 90 percent of people diagnosed with ovarian cancer survive five years after diagnosis and with a much better quality of life than ever before. New research and clinical trials are being conducted to study potential ovarian cancer treatments and to develop new screening and diagnostic tools that will one day allow experts to detect ovarian tumors much sooner in their progression.

Talk With Others Who Understand

MyOvarianCancerTeam is the social network for people with ovarian cancer and their loved ones. On MyOvarianCancerTeam, thousands of members come together to ask questions, give advice, and share their stories with others who understand life with ovarian cancer.

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