When Susannah started feeling unwell with pelvic pain and bloating, she visited her GP for reassurance. “I was told it was irritable bowel syndrome (IBS) 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 GP 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 realised 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
At Target Ovarian Cancer, we hear echoes of this story all too often. Women who have visited their GPs 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 IBS, or urinary infections. And all too often, the diagnosis of ovarian cancer comes too late.
Our latest research shows that 26% of women with ovarian cancer symptoms had three or more appointments with their GP before they were referred for tests.
No GP 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
We urge 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 a GP appointment:
-
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 GP 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 GP. These can all be signs of ovarian cancer.
Ask about ovarian cancer
If you are worried that you might have ovarian cancer, tell your GP. 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 GP 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 GP 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 IBS, or an all-clear in a urine test. These are red flags that your GP needs to know about, to make sure of the correct diagnosis.
Here’s how to get the most out of your GP 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 to the surgery in person.
-
Give your GP 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 GP 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. 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.
Written by Amy Schofield, Senior Healthcare Engagement Officer, Target Ovarian Cancer.
You can find more information on symptoms and the tests your GP should do on our website. If you'd like more information, or if you are worried about ovarian cancer, you can call Target our support line on 020 7923 5475.
