Raising awareness of ovarian cancer

Most women are unaware of the key symptoms of ovarian cancer, and many healthcare professionals believe symptoms only occur late in the course of the disease: as a result, patients face delays in diagnosis and starting treatment, and mortality is increased

OVARIAN CANCER IN NUMBERS

There are 41,000 people living with ovarian cancer in the UK, and around 7,000 newly diagnosed cases each year.¹ If diagnosed at the earliest stage, nine out of ten women will survive.² But two thirds of women are diagnosed late, when the cancer is harder to treat.³

Almost half of women diagnosed with ovarian cancer (45%) must wait three months or more from first visiting their GP to getting a correct diagnosis.⁴ As well as this, over a quarter of women with ovarian cancer (27%) are diagnosed through an emergency department presentation.⁵

We are facing an awareness crisis in ovarian cancer. Four out of five women (79%) do not know that persistent abdominal distension (bloating) is one of the symptoms. Awareness remains alarmingly low for the other key symptoms: pelvic or abdominal pain (only 32% recognise this as a symptom), early satiety and/or loss of appetite (3%), urinary urgency and/or frequency (1%).⁶

Further compounding the issue is that nearly half of GPs (44%) mistakenly believe symptoms are only present in the later stages of ovarian cancer.⁴

When symptoms are ignored or misdiagnosed as more common conditions such as irritable bowel syndrome (IBS), ovarian cancer has time to advance before it is found. The number of treatment options decrease, as do the chances of long-term survival. The disease kills three in ten women in the 12 months after diagnosis,² making it imperative that it is diagnosed as early as possible to get treatment started quickly.

General practice nurses are at the centre of women’s health. Contraception, sexual health advice, menopause management and cervical screening are just some of the regular interactions nurses have with women. These are opportunities for educating women, ensuring they are equipped with the knowledge to recognise cancer symptoms. In this way, there is potential for lives to be saved.

Worryingly, 40% of UK women think cervical screening detects ovarian cancer.⁶ Confusion between cervical cancer and ovarian cancer can be fatal. Thinking that a smear test also detects ovarian cancer stops people from looking out for its symptoms.

The cervical screening appointment is a prime opportunity to have a conversation and inform patients that cervical screening only picks up problems with the cervix, not ovaries, making symptom recognition even more vital. It is also any opportunity to inform women of the symptoms of ovarian cancer and the steps they should take if they are worried.

RISK FACTORS

The risk of developing ovarian cancer for the general population is 2%.¹ The most important risk factors are age (most cases are in women aged over 50) and a family history of ovarian or breast cancer.

Hereditary ovarian cancer is most commonly caused by a variant in either the BRCA1 or BRCA2 gene. These variants increase the risk of developing breast cancer and increase the risk of developing ovarian cancer from two per cent to 35–60 per cent for BRCA1 and 10–30 per cent for BRCA2 gene variant.⁷

Not everyone who inherits a variant in the BRCA1 or BRCA2 gene will develop cancer, but it does substantially increase the risk. If someone presents with potential symptoms of ovarian cancer, it’s important to ask about family history – if there are two or more cases of ovarian cancer and/or breast cancer on either side of the family, this indicates a higher risk of having a genetic variant that could increase their risk of developing ovarian cancer.

Genetic testing can result in patients finding out about their own risk, the risk of their family members developing cancer, and if they already have a diagnosis of ovarian cancer it may also have implications for their treatment.

If a variant is found, many women feel shock, anger or anxiety. Some people expect to have a gene variant and are glad to have an explanation for the cancers in their family. Everyone with a positive test should receive more genetic counselling to explain the impact of this result.

‘After my diagnosis I was advised to have some genetic testing and eventually I found out I have the BRCA2 variant. There was no history of cancer in the family but when I questioned my relatives, I found out that two of my grandad’s four sisters had died young.

‘I know that the results of the genetic testing might have an impact on my daughter and I’ve tried to be honest with her about what that might mean. She knows she will need a test at some point, but the genetics team at the hospital has been very reassuring.’ Sarah, diagnosed with stage IV ovarian cancer in 2018.

Download Target Ovarian Cancer’s genetics guide, available at https://targetovariancancer.org.uk/sites/default/files/2020-07/TOC-Hereditary-Guide_0.pdf to help answer a patient’s questions about whether their ovarian cancer could be hereditary, what a genetic test involves, and the potential implications of the results for them and their family.

Ovarian cancer in younger women

Although it's uncommon, those who are younger and pre-menopausal can get ovarian cancer. Around 1,000 women under the age of 50 develop ovarian cancer every year.¹ That’s why it's important that everyone is aware of the symptoms of ovarian cancer, especially for those with a family history of ovarian or breast cancer.

‘The news was a huge shock. I was 32 and facing a"¯radical hysterectomy and early onset menopause. In many ways I just didn't fit the stereotype for ovarian cancer because I was younger, but just because you don’t fit the mould of someone who might have it, doesn’t mean doctors shouldn’t consider it. Early diagnosis saved my life.’ Claire, diagnosed with stage I ovarian cancer in 2014.

SYMPTOMS

The key to an early diagnosis is noticing symptoms that are unusual and empowering women to visit a healthcare professional.

The symptoms of ovarian cancer are:

• Persistent bloated abdomen
• Always feeling full
• Abdominal pain
• Needing to urinate more

Occasionally there can be other symptoms, such as changes in bowel habit, fatigue, unexplained weight loss.

Although it is not usually an ovarian cancer symptom, any post-menopausal bleeding should always be investigated. Post-menopausal bleeding is the main symptom of endometrial cancer but can also occur in ovarian malignancies.

And remember, this is not a checklist, a patient doesn’t need to have all these symptoms before they should contact a healthcare professional. Just one of these symptoms that is new, persistent, and occurs over three weeks or more, is something that needs attention.

Many people mistakenly believe that symptoms of ovarian cancer only present in late stages. However, early-stage ovarian cancer can cause mild or non-specific symptoms.

‘I started noticing something was wrong with me, but I couldn’t put my finger on what. I remember feeling tired, but I’d always had an underactive thyroid and fatigue wasn’t all that unusual for me. I was also home-schooling due to the pandemic, so it was easy to assume it was that.

‘After the fatigue came bloating, and then pain in my lower abdomen. At this point I thought maybe I had appendicitis. I had an e-consultation with the GP and I was concerned enough to ask for a face-to-face consultation. My doctor was amazing. He said he wanted to do a [cancer antigen] CA125 blood test for his own “peace of mind”. If not for him, I might have been diagnosed far later than I was.

‘When my CA125 results came back raised things moved quickly and I saw a gynaecologist within a few days. After an ultrasound, CT and MRI scan I was eventually diagnosed with stage IV ovarian cancer.’ Alex, diagnosed with stage IV ovarian cancer in 2021.

COMMON MISDIAGNOSES

In general, women have a one in 50 chance of developing ovarian cancer during their lifetime,1 but women over the age of 50 have a higher risk, and most cases of ovarian cancer occur in women who have already gone through the menopause.

Sometimes ovarian cancer symptoms are put down to getting older or being menopausal. A new IBS diagnosis is extremely uncommon in women over 50, so if a patient is in this age bracket and you suspect IBS, they should also be referred for ovarian cancer tests.

‘Prior to my diagnosis I spent two years going back and forth to the GP with various symptoms that were confused with menopause. I had constant abdominal bloating, hip pain, fatigue and a swollen abdomen. I knew quickly that something was wrong; it just didn’t feel like the menopause was the cause of all my symptoms. Unfortunately, trying to convince the GP that there was something more going on was a real struggle. I never seemed to see the same doctor twice and even when I was given a CA125 blood test I was told not to worry because, although the level was raised, it wasn’t in the thousands. I now know that was wrong – anything over 35 should prompt further tests.

‘Over time the symptoms got worse to the point where even moving around caused incredible pain and I couldn’t sleep or sit without discomfort. Two days before my diagnosis I ended up in A&E. I had been in bed for a few days and had to get my husband to call an ambulance. I have never had pain like that. Fortunately, the nurses at the hospital did a marvellous job of easing my pain and worked quickly. A few days later I was diagnosed with stage IIIc high grade serous peritoneal cancer. At the time my main emotion was relief. I finally knew what was wrong with me and I was pleased to be out of pain.’ Helen, diagnosed with stage IIIc peritoneal cancer in 2019.

DIAGNOSTIC PATHWAY

There is currently no effective national screening programme for the detection of ovarian cancer. Symptoms awareness is our best tool to achieve an early diagnosis.

If a patient is experiencing symptoms of ovarian cancer as outlined above, the GP should refer for a CA125 blood test. This measures the level of a protein called CA125. A normal level of CA125 is usually less than 35 units per millilitre (u/ml).

Some ovarian cancers produce extra CA125, which results in the patient's level of CA125 being above the normal range. However, CA125 is neither entirely sensitive nor specific for ovarian cancer. It is possible to have a normal CA125 and still have ovarian cancer, and equally CA125 can be raised in benign conditions such as endometriosis. For this reason, someone with a normal CA125 result but persistent symptoms should be encouraged to return for further tests.

If the CA125 level is high, NICE guidance recommends referral for an ultrasound of the abdomen and pelvis.⁸ If the ultrasound suggests ovarian cancer, the patient requires an urgent referral to a gynaecological cancer service for further investigation. Again, it is important that if tests are not clear or inconclusive, that the patient is encouraged to return if symptoms persist.

As well as helping to diagnose ovarian cancer, CA125 blood tests are often used to monitor the response to treatment of ovarian cancer or check for signs of recurrence.

TREATMENT

Treatment of ovarian cancer varies depending on the stage and histological subtype of the cancer.

In very early-stage ovarian cancer, surgery may be the only treatment required. The usual treatment for advanced ovarian cancer is a combination of surgery and chemotherapy. The aim of surgery is to remove all visible evidence of cancer.

While surgery is the first treatment in many cases, in those where the disease is in a difficult location, or surgery would not be able to remove all of the disease, a neo-adjuvant approach is used. This involves chemotherapy first with the aim of shrinking back disease to make surgery possible. The surgery is followed by further chemotherapy to remove any microscopic disease left behind.

Ovarian cancer surgery is often very radical. Bowel surgery and splenectomy can be indicated to ensure that all evidence of cancer is removed. Women are consented for all possibilities as disease may be found during surgery that wasn’t seen on preoperative imaging.

Women who have co-morbidities or who are considered to be at high risk of complications may receive either surgery or chemotherapy on its own.

Although these treatment options are available for the majority of those diagnosed with ovarian cancer, one in five women are diagnosed too late to receive any treatment.⁹

MAINTENANCE TREATMENT

Some women with ovarian cancer may be offered targeted cancer treatments when they have completed chemotherapy. There are two types of targeted treatments currently available – poly-ADP ribose polymerase (PARP) inhibitors and the vascular endothelial growth factor (VEGF) inhibitor, bevacizumab. The aim of the targeted treatments is to reduce the risk of the cancer recurring and/or prolong the interval before the cancer returns.

The targeted therapies are not without their own side effects. These include but are not limited to:

• Gastrointestinal side effects such as nausea, vomiting, loss of appetite, constipation, or diarrhoea
• Fatigue
• Headaches
• Bone and muscle pain and stiffness
• Haematological side effects such as anaemia, low white cells count, low platelets. Rarely, some patients treated with the PARP inhibitors have developed a blood cancer, such as myelodysplastic syndrome or acute myeloid leukemia
• Hypertension and proteinuria
• Impaired wound healing, fistula formation (associated with bevacizumab)

Women on the targeted therapies are closely monitored by their treating team. Often side effects are managed with dose reductions or interruptions. Any woman presenting to their primary care team with side effects associated with the targeted therapies should be encouraged to contact their treating team. This is often via a 24-hour contact number where they can speak to a practitioner who can triage their call.

LIVING WITH CANCER

Advanced ovarian cancer is a chronic recurring condition. GPNs are at the forefront of long-term illness management and have the skills to support women after treatment.

You can support those with advanced ovarian cancer to manage the consequences and side effects during cancer care reviews. Here, you can start a conversation to ensure patients don’t suffer in silence and you can signpost them to further support.

‘People sometimes forget that you’re living with cancer. Recently I went for a scan and the registrar oncologist used the word ‘advanced’ and I broke down. It doesn’t matter how strong or independent you are, when you’re in that clinic and you’re feeling anxious, you suddenly become that vulnerable lady again.’ Allyson, diagnosed with stage III ovarian cancer in 2020.

At Target Ovarian Cancer we offer a host of supportive services for those affected by ovarian cancer. Our confidential nurse-led support line is there for anyone affected by ovarian cancer.

People can ask our specialist nurses about anything to do with ovarian cancer, including:

• Worries about ovarian cancer symptoms
• Visiting the GP and having tests
• If they've just been diagnosed
• Questions about treatment including chemotherapy
• Emotional or mental wellbeing worries
• Technical questions about ovarian cancer drugs, surgery or clinical trials

Even if patients have no idea what they're looking for, and just want to talk – there are no bad questions – they can call 020 7923 5475 or visit targetovariancancer.org.uk/support.

REFERENCES

1. Cancer Research UK. Ovarian cancer incidence statistics; 2022 https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/ovarian-cancer/incidence

2. Broggio SJ, Broggio J. Cancer Survival in England: adults diagnosed between 2013 and 2017 and followed up to 2018. Office for National Statistics; 2019 https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/datasets/cancersurvivalratescancersurvivalinenglandadultsdiagnosed

3. National Cancer Intelligence Network. Survival by stage. http://www.ncin.org.uk/publications/survival_by_stage

4. Target Ovarian Cancer. Pathfinder 2016: transforming futures for women with ovarian cancer; 2016. https://www.targetovariancancer.org.uk/pathfinder

5. NHS Digital. National Disease Registration Service. Get Data Out: Ovary, fallopian tube and primary peritoneal carcinomas. https://www.cancerdata.nhs.uk/getdataout/ovary

6. Target Ovarian Cancer. Pathfinder 2022. Survey of 1,002 women using the Ovarian Cancer Awareness Measure, February 2022

7. Chen J, Bae E, Zhang L, et al. Penetrance of breast and ovarian cancer in women who carry a BRCA1/2 mutation and do not use risk-reducing salpingo-oophorectomy: An updated meta-analysis. JNCI Cancer Spectrum. https://pubmed.ncbi.nlm.nih.gov/32676552/

8. NICE CG122. Ovarian cancer: Recognition and initial management; 2011. https://www.nice.org.uk/guidance/cg122

9. National Cancer Intelligence Network. The Ovarian Cancer Audit Feasibility Pilot: Geographic variation in ovarian, fallopian tube and primary peritoneal cancer treatment in England; 2020. http://ncin.org.uk/cancer_type_and_topic_specific_work/cancer_type_specific_work/gynaecological_cancer/gynaecological_cancer_hub/ovarian_cancer_audit_feasibility_pilot_outputs