Patient FAQ

Ovarian cancer is a disease that occurs when abnormal cells in the ovaries grow at an uncontrollable rate and form a mass of tissue known as a tumour. Many types of tumours can start in the fallopian tubes or one or both ovaries.

No. Some tumours are not cancerous (also known as “benign”) and never spread beyond the ovaries or fallopian tubes. However, other tumours may be cancerous (“malignant”) and can spread to other parts of the body, such as the pelvis and abdomen.

Ovarian cancer is the sixth most common cancer in women and the fifth most common cause of cancer related deaths. It will affect 1 in 52 women in the UK during their lifetime, which means about 20 women are diagnosed with the disease each day. Most cases occur in older women — about 8 out of 10 cases occur in women 50 or older. However, this disease can also affect younger women.

The symptoms that are most commonly reported in women diagnosed with ovarian cancer are:

• Increased abdominal size and persistent bloating
• Persistent pelvic and abdominal pain
• Difficulty eating and feeling full quickly, or feeling nauseous

Other symptoms include back pain, unexplained bleeding, needing to pass urine more frequently than usual, pain during sexual intercourse, constipation and fatigue.

If you notice any of these symptoms for two or more weeks, you should go and see your doctor for an evaluation. The sooner ovarian cancer is found and treated, the better the chance of recovery.

The symptoms that are most commonly reported in women diagnosed with ovarian cancer are:

• Increased abdominal size and persistent bloating
• Persistent pelvic and abdominal pain
• Difficulty eating and feeling full quickly, or feeling nauseous

Other symptoms include back pain, unexplained bleeding, needing to pass urine more frequently than usual, pain during sexual intercourse, constipation and fatigue.

If you notice any of these symptoms for two or more weeks, you should go and see your doctor for an evaluation. The sooner ovarian cancer is found and treated, the better the chance of recovery.

Whilst the majority of ovarian cancer are not inherited, about 20 to 25 percent of women diagnosed with ovarian cancer have a hereditary tendency to develop the disease. If you have relatives with breast and/or ovarian cancer, you may be at higher risk for developing ovarian cancer.

In some cases, this may be due to an inherited mutation in either the BRCA1 and/or BRCA2 gene. These genes are present in everyone, but in some people they can appear in a different form, and may lead to an increased chance of breast and/or ovarian cancer.

Your doctor can assess your medical and personal family history and advise you on your own lifetime risk of ovarian cancer.

Ovarian cancer is the 5th most common cause of cancer-related deaths in women, and death rates generally increase with age. For all types of ovarian cancer, the 5-year relative survival is 46%.

If ovarian cancer is diagnosed at the earliest stage, when it is still confined to one ovary, then up to 9 out of 10 women will still be alive 5 years later. However, only one-third of women with ovarian cancers are diagnosed in the early stages.

Only 32% of the women diagnosed at stage 3 and 16% of women diagnosed at stage 4 will still be alive 5 years or longer after diagnosis.

No. A cervical smear test is only used to detect cervical cancer. It cannot detect ovarian cancer.

The ROCA Test is a simple blood test that assesses a woman’s risk of having ovarian cancer. The test is intended for women over years old who have tested positive for BRCA1 or BRCA2 gene mutation and who wish to delay risk reducing surgery. It is currently the only test recommended in the NICE guidelines

The ROCA Test, which is edorsed by NICE, uses your CA-125 measurements, establishing your baseline levels of CA-125 with other parameters such as age to reveal an individualized profile of change over time rather than relying on a single CA-125 fixed cutoff value.

You may be eligible for the ROCA Test if you are over 35 and have an alteration in the BRCA1 or BRCA2 genes.  You should talk with your doctor about whether the test is right for you.

If one or more members of your family have had ovarian and/or breast cancer (including male breast cancer), you may be classed as having a family history of these cancers. However, your history will also depend on your ethnicity and other factors. To understand your risk of ovarian cancer you should make an appointment to speak with your GP. You may be referred to a specialist clinician who will review your family history and risk of ovarian cancer. If appropriate, you may be recommended to undertake a BRCA test.

Surgical removal of the ovaries and fallopian is the recommended option for women with BRCA mutations as this prevents ovarian cancer from developing. The ROCA Test should only be considered as a short-term option until a woman is ready to undertake preventative surgery. We recommend you consult your doctor if you wish to explore your options.

No, patients who have had ovarian cancer do not meet the criteria for the ROCA Test.

No, patients who are pregnant are not eligible to take the ROCA test. You may resume testing 6 weeks after the end of your pregnancy.

Yes, but it is recommended to wait until 12 months after starting HRT for menopausal symptoms before starting the ROCA Test.

Women who have had both of their ovaries removed, but still have their fallopian tubes, may meet the criteria for the ROCA Test if they are over 35 years old and have an alteration in a BRCA gene.

The ROCA Test was evaluated in a 4 year study in this population of women considered to be at high risk of ovarian cancer. Those who were younger than 35, were not included in the study. It is considered that the risk of developing ovarian cancer in women under 35 is low.

A woman is considered to be postmenopausal when she has not had her period for 12 months or after 12 months of starting HRT for menopausal symptoms.

It is recommended that you have a ROCA test 3 times a year.

If your results are not Normal, your clinician may recommend a repeat ROCA Test within the next six weeks. You may also be referred for a transvaginal ultrasound (TVUS) scan of your ovaries or other clinical assessment determined by your clinician.

You can always start taking the ROCA Test again, even if you have stopped for a period of time. Discuss this with your clinician

Your ROCA Test result provides you with your own personal risk assessment of having ovarian cancer. Your result may include:

• A numerical score (e.g., 1 in 5000)
• A categorisation (Normal, Intermediate or Elevated)

If your ROCA Test result is outside of the Normal range (Intermediate or Elevated) at any time during surveillanceit does not mean that you definitely have ovarian cancer. Your clinician may ask you to take a repeat ROCA Test within the next six weeks, refer you for a transvaginal ultrasound (TVUS) scan of your ovaries, or suggest other possible clinical assessments.

The ROCA Test works by tracking your baseline CA125 level and accurately assessing change. Each time you have the test, all previous CA125 test results are used. Also, ovarian cancer can develop rapidly so regular testing is recommended.