Community Views: What Others Don’t Understand About Ovarian Cancer

Ovarian cancer comes with many misconceptions. Friends and family often lack awareness of this type of cancer. It can feel frustrating to need to educate about the disease while living with it.

So, we recently asked members of our community on Facebook, “What is one thing about ovarian cancer that people don’t understand?” Their answers are listed below.

No standard screening

One difficult aspect of ovarian cancer is that there is no standard screening method. Most women undergo regular Pap tests and mammograms after a certain age. These tests screen for cervical cancer and breast cancer. But there is no screening method for ovarian or other gynecological cancers.¹

Identifying ovarian cancer early is challenging. Doctors order diagnostic tests after symptoms present. Women must be aware of ovarian cancer symptoms and monitor their bodies for signs. Educating all women from an early age about symptoms is vital.¹

“Diagnosis isn’t easy. There isn’t a standard screening of any kind.”

Dismissed or ignored symptoms

Ovarian cancer symptoms often are easy to miss. You may attribute these symptoms to other issues and not worry. Doctors may also dismiss symptoms as unconcerning.

Some of the most common symptoms of ovarian cancer are:^2,3

• Irregular (for you) vaginal bleeding or discharge
• Bloating
• Pelvic or abdominal pressure/pain
• Feeling full quickly or difficulty eating
• Changes to bladder and bowels

“Most reported symptoms are usually shrugged off by medical professionals and even ourselves as common 'bad period' symptoms, especially for those of us with endometriosis. Push to be heard and taken seriously.”

“My mother was diagnosed with an ulcer before they realized it was ovarian cancer.”

Risk factors

Many risk factors raise the possibility of developing ovarian cancer. Some of these include:^4,5

• Being over 40
• A history of uterine, breast, or colon cancer
• A family member diagnosed with ovarian cancer
• A first pregnancy after age 35 or never having a full-term pregnancy
• Using fertility treatments
• Genetic mutations or markers for cancer
• Smoking
• Being overweight

While these factors increase your risk, ovarian cancer can strike without risk factors. Our community shared that age, in particular, is not a limiting factor.^4,5

“It can happen at ANY age!”

“It doesn’t matter at what age it will strike.”

Cancer-related fatigue

Ongoing fatigue is one of the most challenging aspects of having cancer. No amount of sleep or rest banishes the tired, weak, bone-weary exhaustion you feel.

This fatigue can linger long after treatments end. It affects your ability to engage in activities you enjoy. Basic physical activities like eating, climbing stairs, making dinner, or doing dishes require more energy than you have. Many feel discouraged and depressed as the fatigue does not lift.⁶

“I enjoyed doing things with my friends like dinner or some activities, but I am limited on what I can do, and that is very depressing.”

Cancer is lifelong

After treatment, ovarian cancer hopefully goes into remission. Remission is a total or partial decrease of the cancer symptoms. But remission does not mean cure. You continue to monitor your body for signs of recurrence.^7,8

Even in remission, cancer cells can still be in the body. You continue to have regular follow-ups with doctors. Tests and imaging scans are part of your life. Many must maintain a consistent, long-term chemo schedule.^7,8

Our community shared how others often do not understand the ongoing nature of ovarian cancer management.

“I frequently get told, 'I thought you already beat that.' The concept of a disease that is longitudinal and ongoing seems difficult for folks to accept.”

“People think you are in remission, and you are ALL CURED! This happens especially when I have my hair.”

“There is no cure for cancer. It lays dormant until it doesn’t. Where it lands, nobody knows.”

“Even if you are NED [no evidence of disease], you’re still waiting for a recurrence.”

We appreciate everyone who joined this conversation. Sharing your experiences helps everyone feel less alone and isolated with this disease.