Worried about ovarian cancer? Here’s how to make sure your concerns are heard

When Susannah started feeling unwell with pelvic pain and bloating, she visited her doctor for reassurance.

"I was told it was irritable bowel syndrome and was prescribed some medicine to treat it, but the symptoms didn't go away.” 

The pain got so bad that Susannah ended up in the Accident & Emergency department of her local hospital.

"This time, they said it was constipation,” she says. "I really felt I wasn’t being listened to. I’d had a fibroid during my first pregnancy, so I raised the possibility that it was a gynaecological issue and finally, I was sent for a scan.”  

The scan appointment took weeks to come through but once it had been performed, things moved very quickly. “The doctor called to say they’d found a mass. I was promptly referred to the hospital and had lots of other scans. I also had a CA125 blood test, which came back very high." 

On a rollercoaster 

"Doctors started using the word “cancer” and I was booked for surgery immediately. It was like riding a rollercoaster.” 

Susannah and her husband had been trying for a third child.

"In the early autumn I had extensive surgery, with a radical hysterectomy. I realized I wouldn’t have that chance again.”  

After surgery, Susannah received the devastating news that she had Stage III ovarian cancer.

“Our lives turned upside down,” she remembers. Her diagnosis was followed by two further brutal surgeries, one of which resulted in a stoma, then a third to reverse the stoma.  “After recovering from surgery, I had six rounds of chemotherapy, and also found out I have a BRCA1 mutation. I had a recurrence in 2020, during the pandemic. It was devastating to hear the news.” 

It doesn’t have to be this way 

Target Ovarian Cancer hears echoes of this story all too often. Women who have visited their doctors with ovarian cancer symptoms such as bloating, pelvic/abdominal pain, needing to wee more often, feeling full quickly.

All too often women are misdiagnosed with irritable bowel syndrome, or urinary infections. And all too often, the diagnosis of ovarian cancer comes too late.

The charity's latest research shows that 26 per cent of women with ovarian cancer symptoms had three or more appointments with their doctor before they were referred for tests.  

No doctor wants to miss a diagnosis.

No woman wants to face an ovarian cancer diagnosis that could mean it’s too advanced to be treated, that the plans they had will never happen, that their families will one day too soon be left without them. 

You know your body best 

Target Ovarian Cancer urges you to listen to your body, and when something isn’t right, to refuse to be dismissed. 

It’s your body, and you know what is and isn’t normal for you. If you experience any of those four key symptoms, make an appointment with your doctor: 

• Persistent bloating  
• Feeling full quickly and/or loss of appetite 
• Pelvic or abdominal pain (that’s your tummy and below)  
• Urinary symptoms (needing to wee more urgently or more often than usual) 

Make an appointment with your doctor if your symptoms are: 

• Frequent – they happen more than 12 times a month 
• Persistent – they don’t go away 
• New for you 

If you also experience changes in your bowel habits, extreme fatigue, or unexplained weight loss, tell your doctor. These can all be signs of ovarian cancer. 

Ask about ovarian cancer 

If you are worried that you might have ovarian cancer, tell your doctor. They will appreciate you sharing your concerns. You have the power to open the conversation:  

• Keep a symptoms diary – this will help you to accurately track them and helps your doctor to pinpoint the frequency and persistence of your symptoms. 
• Talk to your doctor about diagnostic tests for ovarian cancer – a blood test called a CA125 and a transvaginal ultrasound scan. If your doctor doesn’t suggest the tests, and you are worried, you can request them.  
• If you are over 50 - don’t accept a first diagnosis of irritable bowel syndrome, or an all-clear in a urine test. These are red flags that your doctor needs to know about, to make sure of the correct diagnosis.  

How to get the most out of your appointment:  

• When you make the appointment, tell your surgery you are worried about cancer and need to be seen as soon as possible. 
• You can book a double appointment with your doctor if you need time to discuss more than one concern. You may also be able to book a telephone call for advice if it is difficult to get there in person. 
• Give your doctor as much information as possible. Write down in advance anything you would like to discuss or any specific concerns you have and take this with you.  
• Think about whether anyone in your family has had ovarian or breast cancer, on either your mother’s or father’s side. It might be helpful to ask relatives about this. If you do have a family history of ovarian and/or breast cancer, make sure you tell your doctor. 
• Keep going back to your doctor if your symptoms don’t improve, even if any tests and investigations are negative. 
• Take a friend or family member to support you at any follow-up appointments. 

Susannah is now on a maintenance drug that should stave off the need for further chemotherapy and help her to live well for longer. 

As she says: “The more we talk about it, the more people will know about it.” 

Early diagnosis gives everyone the best chance of living.

Arm yourself with knowledge about ovarian cancer symptoms and diagnostic tests and remember that you know your body best - act early if you feel something is wrong. 

Further information, support and resources

For more information on symptoms and the tests your doctor should do, or if you are worried about ovarian cancer, please reach out to Target Ovarian Cancer for further information, great support and resources for both patients and healthcare professionals.

Furthermore, visit the World Ovarian Cancer Coalition website to learn more about work underway across the globe towards a world where every woman with ovarian cancer has the best chance of survival, and the best quality of life – wherever she may live. The World Ovarian Cancer Coalition has a useful map of partners across the globe for searching organizations and activities across countries. Partner organizations can be as small as kitchen table-based patient advocacy groups in rural communities, to national healthcare associations based in major metropolitan areas.

And did you know that in addition to March being Ovarian Cancer Awareness Month in the UK, there is also World Ovarian Cancer Day marked annually on May 8 - established in 2013 by a group of leaders from ovarian cancer advocacy organizations around the world. 2023 sees the second year of its three-year campaign theme, ‘No Woman Left Behind.’

Thank you to Amy Schofield, Senior Healthcare Engagement Officer at Target Ovarian Cancer Charity who collaborated on this important article.