Ovarian Cancer

Information

Ovarian cancer occurs when abnormal cells in a woman’s ovaries grow uncontrollably and form a tumor. In the US, more than 220,000 women are thought to be living with the disease, and in the UK around 40,000. As with all cancers, early detection gives the best chance of successful treatment.

What is ovarian cancer?

The term ovarian cancer refers to cancers that start in the ovaries, although research now suggests that most cases of the commonest type – epithelial ovarian cancer – really start in the fallopian tubes that link the ovaries to the womb (uterus).

Epithelial ovarian cancer, which is found on the outer surface of the ovary, accounts for around 90% of ovarian tumors. The other, much rarer, types are stromal tumors that originate in the ovary’s structural cells that also produce the female hormones estrogen and progesterone; and germ cell tumors, starting in cells that produce the woman’s eggs (ova).

Sometimes the term “ovarian cancer” is also used loosely to describe cancers of the fallopian tubes or peritoneum, a membrane that covers the abdominal organs. These are actually separate types of cancer, though symptoms and treatment are more or less the same as for ovarian cancer.

Ovarian cancer is most often found in women who have had the menopause and is much less common in younger women – about 8 in 10 diagnoses are in women over 50.

The Centers for Disease Control (CDC) ranks ovarian cancer as 10th most common cancer in the US, and estimates that over 22,000 women are diagnosed with the disease each year. More than 14,000 die from it. In the UK, there are about 7,300 new cases annually and about 4,100 deaths. Among UK women it’s the fifth most common cancer. Those diagnosed in the earliest stages of the disease have more than a 90% likelihood of living for at least five years.

“Find things that make you smile. Take pleasure from simple things. Talk to people”
– response in 2018 HealthUnlocked ovarian cancer survey

What are the symptoms of ovarian cancer?
Ovarian cancer is often referred to as “the silent killer” because its symptoms mimic those of other conditions and make it difficult for women to know when to seek medical help. Also, many people aren’t aware of the symptoms. For example, in a 2018 survey among women with the disease on the HealthUnlocked website, 66% of respondents said that until they went to the doctor they didn’t know that any of the common symptoms might signal ovarian cancer.

Here are some of the most common symptoms:

Bloating
Abdominal pain
Feeling full after eating
Frequent urination

You might also have:

Changes in your period
Back pain
Trouble digesting food
Constipation
Fatigue

‘My stomach became very swollen. I had discomfort after eating, feeling full and sore with a bloated and painful abdomen.’
– response in 2018 HealthUnlocked ovarian cancer survey

These symptoms often don’t indicate ovarian cancer, but if you notice any, monitor yourself for any changes that aren’t normal for you. If suspicious symptoms persist daily for two weeks or more, make an appointment to see your doctor.

Because many conditions can produce similar symptoms, ovarian cancer can be difficult to spot, especially in its early stages and in younger women where it is less expected. If your doctor doesn’t suspect ovarian cancer but your instinct continues to tell you something is wrong, do get checked again. If necessary, you can ask for a second opinion to help find out what’s going on. Left untreated, ovarian cancer symptoms will worsen over time. The earlier it is diagnosed the better your chances of survival.

‘Initially my doctor dismissed my symptoms. It took the third visit before they would believe me that something was wrong.’
– response in 2018 HealthUnlocked ovarian cancer survey

How is ovarian cancer diagnosed?

Usually, the only way to confirm whether you have ovarian cancer is through surgery or a biopsy to obtain a sample of your tissue. However, there are some tests that a doctor can carry out to see if it’s likely your symptoms might indicate cancer. They include:

CA-125 test: CA-125 is a tumor marker (antigen), a protein in the body. If a woman with symptoms is found to have high levels of CA-125 in her blood, this may lead her doctor to suspect ovarian cancer. However, CA-125 tests are not always accurate and often give both false negatives and false positives.

Abdominal exam: Your doctor will feel around your abdomen for any signs of abnormalities, like enlarged organs or lumps, while also testing your response to pain. This is a good way to measure the severity of symptoms and narrow down a potential cause.

Ultrasound: During this test, doctors will use ultrasound equipment, which uses sound waves to take images of reproductive organs like the vagina, uterus, fallopian tubes and ovaries. This will let them see signs of tumors or other unusual activity. While ultrasounds provide a thorough appraisal, they cannot for certain detect ovarian cancer. For instance, even if a tumor is discovered, it’s difficult for a doctor to determine whether it’s cancerous or not. Tumors can be ‘benign’, meaning they stay put and don’t spread, or malignant (cancerous), in which case they can invade other parts of the body.

Further testing may include:

A CT (or CAT) scan, which uses X-rays to build up detailed pictures of the ovaries
A needle biopsy, in which a needle is used to take a sample of your ovary tissue or surrounding fluid to check for cancer cells
A laparoscopy, in which a thin tube with a camera is inserted through a small cut to inspect the ovaries; it can also be used to take a sample for checking
A chest X-ray, to check for signs of cancer spread.

Stages

There are various stages of ovarian tumors. Staging is complex and each stage has further sub-divisions that let doctors classify the cancer in more detail.

Stage 1 ovarian cancer refers to tumors that are confined to the ovaries.
At Stage II, tumors spread outside the ovaries into the pelvic area.
By stage III, tumors have spread into your abdomen or are found in lymph nodes in the area.
By stage IV, the cancer has spread (metastasized) to distant parts of the body such as the lungs, liver or brain.

Symptoms of ovarian cancer are not easily recognized, so most cases are not diagnosed until the disease is quite advanced.

The five-year survival rate for women with Stage I ovarian cancer is better than 90% and of those diagnosed at Stage II, 70% will live at least five years. The five-year survival rate decreases significantly for women diagnosed at later stages – 39% for Stage III and 17% for Stage IV.

As well as being ‘staged’ your cancer will be graded as low, moderate or high depending on how the cells look under a microscope and how they are likey to behave – a high grade is most likely to spread.

You can find more details on staging ovarian cancer at the American Cancer Society or Cancer Research UK

What causes ovarian cancer?

The specific cause of ovarian cancer remains a mystery, but several factors play a key role. These include:

Family history – a family member with a previous diagnosis of breast, ovarian, and colon cancer can increase risk, but at least 90% of women who are diagnosed have no family history)
Genetic makeup – mutations in genes known as BRCA1 or BRCA2; at least 10-15% of ovarian cancer diagnoses are thought to be hereditary
Age – women 55 years or older are at higher risk, but younger women can get ovarian cancer
Childbirth – women who have never been pregnant face increased risk
Menopause – women who have passed the menopause are at higher risk
HRT – long-term use of post-menopausal hormone replacement therapy

Things that reduce your risk include:

Having one or more children (your risk drops more if you have a child before age 30)
Breastfeeding for at least a year
Using oral contraceptives – studies show that taking birth control pills decreases risk by 50% if taken for five years or more)
Removal of the ovaries
Removal of the ovaries and fallopian tubes
Having your tubes tied (tubal ligation surgery)

Some people with a family history of breast, ovarian or colon cancer (a high risk factor) opt to have genetic testing to discover if they have the BRCA1 or BRCA2 gene mutations that are commonly associated with ovarian cancer. If your results indicate risk, you should discuss the options with your doctor.

How is ovarian cancer treated?

The precise treatment you get for ovarian cancer is based on the stage and type of your cancer, along with other considerations, such as your general health. It usually includes a combination of surgery and chemotherapy, and sometimes radiation (radiotherapy).

Surgery is often the first step. Options include hysterectomy (to remove the uterus); a bilateral salpingo-oophorectomy (to remove the ovaries and the fallopian tubes); and removal of the omentum, a layer of tissue in the abdomen. Lymph nodes in the pelvic area or abdomen may also be removed – lymph nodes help fight infection and disease throughout the body; cancer commonly spreads to them. The exact surgery you have depends on your individual cancer.

Most women will also have chemotherapy, in which powerful medication is used. It is usually given after surgery to kill any remaining cancer cells. In some cases, it is given before surgery to try to shrink a tumor prior to removal.

“Chemotherapy has had the biggest impact on my life as it has saved it once and hopefully it will again”
– response in 2018 HealthUnlocked ovarian cancer survey

Other newer treatments include targeted therapies, designed to attack only the cancer cells, rather than all cells in an area, and immunotherapy, which utilizes the your own immune system to try to stop the cancer.

Side effects of ovarian cancer medication vary and surgery may also have long-term effects. Patients on chemotherapy typically experience hair loss, fatigue, loss of appetite, memory problems, constipation and nausea along with other side effects. While unpleasant, these should all go away once treatment is complete. If you have trouble with side effects, talk to the medical team – often adjustments can be made to your treatment or side effects can be directly addressed.

The most important thing when considering a treatment plan is to review all options with your medical team so that you can decide with them on the best course of action for you.

‘Engage with the doctors and nurses involved in your treatment and find out what you can about your treatment options.’
– response in 2018 HealthUnlocked ovarian cancer survey

Clinical trials

There is continual research into ovarian cancer and new discoveries are regularly being made.

Many women choose to participate in clinical trials that can give them access to the latest treatments. This also makes some people feel they are helping to fight the disease for others.

If you want to take part in a clinical trial, there are criteria and qualifications you must meet. Having some standard treatments might disqualify you from participating in a trial later on.

You can find out about clinical trials through the US ClinicalTrials.gov website or through the UK Clinical Trials Gateway

‘Get in touch with appropriate charities and hospitals and learn about drug trials and studies.’
– response in 2018 HealthUnlocked ovarian cancer survey

Living with ovarian cancer

How ovarian cancer affects you day-to-day depends on many factors, but you are likely to have lots of different feelings as you come to terms with the illness and cope with the effects of treatment.

Most women will have changes to how they look and feel during treatment and recovery. Hair loss caused by chemotherapy is a big issue for many women, and in those who have not had the menopause, removal of the ovaries will trigger it.

Menopause symptoms, including hot flushes, tiredness, sweats and being anxious or emotional, are likely to be more pronounced than in a natural menopause. That’s because removing the ovaries brings a sudden drop in hormone levels rather than the gradual lowering that happens normally.

Having your womb or ovaries removed will likely be upsetting at any age and you may take several months to come to terms with this.

You will, in any case, need time to recover from surgery. You should take it easy for several weeks then gradually build up activity towards your normal levels. You may be advised not to lift heavy objects or children for some time. You should be able to drive from about four weeks after surgery but can discuss this with your medical team. Some car insurance policies have restrictions on driving straight after surgery, so check your cover.

As you become more able, try to take regular exercise. It can improve your general fitness, which in turn can improve your mental wellbeing. How much exercise you do will depend on your circumstances, but even something as simple as a daily walk is better than nothing. Along with exercise, it’s important to maintain a healthy weight, eat a well-balanced diet and get enough sleep.

“Allow plenty of time to heal. I felt like I was never going to recover but it just needed time. Rest as long as you can. Healing takes a lot of weeks, don’t try and rush it”
– response in 2018 HealthUnlocked ovarian cancer survey

Any serious condition such as ovarian cancer can strain close relationships, interfere with your sex life, limit social activities and make you feel ‘down’. Your partner or others close to you will also have worries. Be honest about how you feel and discuss any issues openly. This can help reduce anxiety and stress, for you and for them. Try to stay connected with your community and keep doing the things you enjoy.

Do accept help – emotional support and practical assistance – from wherever it’s available. Family and friends, medical staff, support organizations and other women with ovarian cancer can all be sources of advice and comfort.

If you’ve had to stop working because of your illness, you may find yourself with financial worries. In the US, government assistance programs, patient advocacy organizations, and pharmaceutical company programs may help with costs of treatment, travel for treatment and general living expenses. In the UK there is a range of benefits people with cancer may be able to claim. You can find out more about UK benefits and financial support on the Macmillan website.

Support

Women dealing with ovarian cancer often feel alone. While family and friends may try their best to be supportive, they might not always have the answers you’re looking for. Connecting with like-minded people, who understand what you’re going through, can be helpful.

There’s good evidence that engaging with others in the same position as yourself can help you cope and ward off such things as depression, which are common in people diagnosed with cancer.

“It helps to speak to someone else who has received the same diagnosis, whether in a support group, at an event or on an online forum”
– response in 2018 HealthUnlocked ovarian cancer survey

There are many online communities and face-to-face local support groups for people with ovarian cancer. You can find many through patient organisation websites and your health team may be able to recommend a local group you could join. There are also groups on Facebook and other internet platforms.

For online support, try the MyOvacome community at HealthUnlocked.

‘Join a forum. They are great for information and hearing other people’s experiences.’
– response in 2018 HealthUnlocked ovarian cancer survey

You can find local support groups through a number of websites. In the US, the National Ovarian Cancer Coalition has a nationwide network of local chapters. In the UK, Target Ovarian Cancer lets you search for local groups by postcode.