Living with ovarian cancer (OC) can be hard to explain to someone who hasn’t experienced it. Friends and family may want to help but not understand why you’re still tired after treatment, why an upcoming scan is weighing on you, or why your experience seems so different from someone else’s.

Ovarian cancer and its treatment can affect many parts of daily life, including energy, relationships, work, and emotional well-being.

In conversations on MyOvarianCancerTeam like this one, “What’s one thing people don’t understand about ovarian cancer?”, members have shared what they wish other people understood about the condition. Their experiences are individual, but together they show how the condition can affect much more than physical health.

Here are six things members wish more people knew — along with ways to help the people in your life better understand your experience.

Knowing someone else with ovarian cancer doesn’t necessarily mean knowing what your experience will be like. Symptoms, treatments, side effects, and the course of the condition can vary from person to person.

One MyOvarianCancerTeam member put it simply: “You may have the same cancer or go through the same chemo, but your journey will have different effects and outcomes from the person sitting next to you.”

“You may have the same cancer or go through the same chemo, but your journey will have different effects and outcomes from the person sitting next to you.”

 

— A MyOvarianCancerTeam member

Another caregiver shared, “Each case is different. My wife’s cancer has taken many twists and turns as it slowly progresses.”

Comparisons may be well-intentioned, but they can leave a person feeling that their own experience is being overlooked.

Ovarian cancer doesn’t necessarily announce itself in an obvious way. Symptoms can resemble common digestive or other health problems, and some people may not notice symptoms early on. Common symptoms can include:

One member recalled, “I had diarrhea, which is an unusual symptom. I also had bloating, acid reflux, feeling full after only eating a few bites. Since most of the literature says you have constipation not diarrhea, I dismissed OC as a possible culprit.”

“I had diarrhea, which is an unusual symptom. I also had bloating, acid reflux, feeling full after only eating a few bites.”

 

— A MyOvarianCancerTeam member

Another MyOvarianCancerTeam member had a very different experience: “I had no symptoms at all, which came as a shock when I was told.”

These experiences don’t establish which symptoms are caused by ovarian cancer or what someone else should expect. New, persistent, or concerning symptoms should be discussed with a healthcare professional.

Some MyOvarianCancerTeam members expressed frustration that ovarian cancer doesn’t seem to receive enough attention or awareness.

“I think this is the forgotten cancer. There is little awareness of how to diagnose or how early,” one member said.

“I think this is the forgotten cancer. There is little awareness of how to diagnose or how early.”

 

— A MyOvarianCancerTeam member

Currently, there are no effective screening tests to detect ovarian cancer early in individuals without symptoms. Questions about ovarian cancer risk, testing, or screening are best discussed with a qualified healthcare professional.

Finishing a phase of cancer treatment doesn’t necessarily mean immediately feeling the way you did before treatment. Some people continue to have physical problems or emotional issues after treatment ends, while others need ongoing monitoring.

One MyOvarianCancerTeam member said, “I knew some of the side effects from chemo, but there are many that I never expected. Two years later, I’m still experiencing them.”

“I knew some of the side effects from chemo, but there are many that I never expected. Two years later, I’m still experiencing them.”

 

— A MyOvarianCancerTeam member

Another described several ongoing concerns: “The fatigue, neuropathy that is still a problem (I thought it would gradually go away), bloating, brain fog, dizziness, and leg swelling — the cause of which is still in question.”

Because symptoms can have different causes, it’s important to discuss ongoing or changing symptoms with your cancer care team rather than assuming they’re an unavoidable part of recovery. During follow-up visits, tell your doctor about new symptoms, pain, or concerns that don’t go away.

It’s possible to enjoy life and still worry about what the next test might show. Members described recurrence (cancer returning) as something that could remain in the background even on otherwise good days.

“Ovarian cancer is so unpredictable. I feel like my life is day to day. Recurrence is always in the back of your mind,” one MyOvarianCancerTeam member said.

“Recurrence is always in the back of your mind.”

 

— A MyOvarianCancerTeam member

Another shared, “I try to be optimistic but some days it’s hard. You just never know when the next CA125 or CT scan will bring bad news.”

People around you may see that you’re doing well and assume the worry has disappeared. They may not see the anxiety that can accompany an upcoming test or waiting for results.

Cancer can change how you think about your health and future. Those feelings may remain largely invisible to other people — especially if you’re trying to stay positive for yourself or those around you.

One MyOvarianCancerTeam member described how difficult it was to voice certain fears: “I am all about positive thinking and cheering for myself and my Teal Sisters. I never feel comfortable talking about the real feelings of death and dying. … Not giving up hope, but … ❤️”

“I am all about positive thinking and cheering for myself and my Teal Sisters. I never feel comfortable talking about the real feelings of death and dying. … Not giving up hope, but … ❤️”

 

— A MyOvarianCancerTeam member

Another member shared, “I’m not the same person I was. I cry often. It’s hard to look forward to things like I used to because I was always healthy and figured I had lots of years left.”

There is no requirement to feel positive all the time. Fear, sadness, anger, hope, gratitude, and joy can all be part of living with ovarian cancer. Emotional support can come from loved ones, support groups, counselors, social workers, psychologists, or other mental health professionals.