What happens if you are diagnosed with ovarian cancer

Content

What if my GP thinks I have ovarian cancer?
Your first hospital appointment
The second appointment
Having surgery first
Having chemotherapy before surgery
At the end of your treatment
Helping yourself

Ovacome is a national charity providing support to anyone ovarian cancer. We give information about symptoms, diagnosis, treatments and ovarian cancer research. Ovacome runs a telephone and email support line and works to raise awareness and give a voice to all those affected by ovarian cancer.

This page gives an overview of what happens when you are diagnosed. It suggests questions for you to ask to help yourself, has useful links to further information and shares the experiences of Ovacome members living with an ovarian cancer diagnosis.

What if my GP thinks I have ovarian cancer?

f your GP thinks you may have ovarian cancer, they might do a blood test to measure your CA125 level.This is a protein that can be raised if ovarian cancer is present. But it can also be raised because of other – less serious – conditions.

The threshold reading is 35 units of CA125 in a millilitre (one thousandth of a litre) of blood. A level of 35 or more means that ovarian cancer could be a possible diagnosis. However, having your period, ovarian cysts or fibroids are just some of the conditions that can also cause your CA125 level to rise.

If the level is raised, or you still have symptoms and the cause has not been found, your GP may ask for an ultrasound scan of your abdomen and pelvis.

This may be a transvaginal scan, when a small ultrasound probe is placed in the vagina to get a good view of the ovaries. If you are not comfortable with this, you can ask for an abdominal scan. You don’t have to give a reason.

If the ultrasound scan shows any abnormalities that affect your ovaries and could be ovarian cancer, then your GP should refer you to a specialist gynaecological oncologist.This is a doctor who is a gynaecologist who is also trained to treat people who have, or may have, cancer.

Mary says: “I had an emergency appointment with my GP who thought I probably had an unsettled stomach. She said it was probably a good idea to do a CA125 test. The test came back at 1,255.”

Your first hospital appointment

Your specialist should tell you what will happen next and how a diagnosis will be made. This may mean having an MRI or CT scan. If you haven’t had a CA125 test and an ultrasound, these will be done too.

See more information about tests for ovarian cancer here. After this appointment, if it is decided that you should have surgery followed by chemotherapy you will receive a date for admission to hospital for your operation. You will usually be asked to attend a preoperative assessment a few days before surgery.

You will get an appointment to come back and discuss the test results. Your results will be reviewed by the team of clinical staff who will be overseeing your care. This is the multidisciplinary team (MDT) which will include staff from different specialisms:

Gynaecological cancer surgeons.
Oncologists, who can prescribe chemotherapy.
Radiologists, who will look at your scans.
Pathologists, who examine your biopsy samples to make sure your diagnosis is correct.

The MDT will discuss your diagnosis and recommended treatment plan with you.

Barbara says: “I had the dreaded call… the scan had shown ovarian cancer… I was devastated. The hardest part was telling my husband, family, and close friends – all utterly shocked.”

Your second appointment

If your tests show that you could have ovarian cancer, your MDT may advise you to have surgery. This will be to remove the cancer and confirm the diagnosis.

Your tests may have shown that your cancer is at a very early stage (stage 1a or 1b) and has not spread. This means you may need surgery only and no chemotherapy at all.

See more information about the staging and grading of ovarian cancer here: ovacome.org.uk/stages-of-ovarian-cancer-booklet

If your cancer has stayed in the pelvis and not spread further, then you may need surgery first with chemotherapy afterwards.

If your scans have shown that the cancer has spread outside the pelvis, then your MDT may recommend that you have chemotherapy before your operation. This can shrink the tumour and make it easier to remove. After your operation you will have more chemotherapy.

This way of having chemotherapy, then surgery followed by more chemotherapy is called interval surgery.

Your specialist will tell you about the risks and benefits of the treatments they recommend. This should include information about possible side effects. You should be given time to think about your choices and what is best for you. You should be told where you can find services to support you.

Jenny says: “Learning it was cancer was a shock. But at the same time, feeling part of the team that was dealing with it really helped. My role was to listen, ask questions, turn up and drink plenty of water!”

Having surgery first - and questions to ask

If you are having surgery only, or surgery followed by chemotherapy, you will be given a date for your admission to hospital for your operation. You will usually be asked to come to a pre-surgery assessment to check your health. This will be a few days before your surgery.

Here are some questions you may want to ask:

If I need surgery, what will be removed?

Can all the cancer be taken away?

Do I need other tests before my surgery?

What are the risks?

Can my fertility be preserved?

Will the surgery cause an early menopause?

What will happen after the operation?

How long will I be in hospital?

Can my friends and family visit me?

How soon can I get back to my usual activities?

When will I get the results of my surgery?

Who can I ask if I have questions before I go into hospital?

The Ovacome support team is here to help you talk through questions and plan for meetings with your team. Details of how to contact us are at the end of this booklet.

Having chemotherapy before surgery

If you have been advised to have chemotherapy to shrink the tumour before your operation, your team will usually need to take a biopsy (sample) from the tumour. This is to check that ovarian cancer is the correct diagnosis.

This is often done by a radiologist, using scans to find the best place to take the sample. The biopsy is taken using a local anaesthetic to numb the area.

After the biopsy, your surgeon will refer you to an oncologist who will plan your chemotherapy.

You are likely to be advised to have three cycles of chemotherapy, one every three weeks for nine weeks. Each cycle is given over a day in hospital as an outpatient.

Another option may be to use a smaller dose of chemotherapy every week for nine weeks before your operation.

You may want to ask:

What choices do I have for my chemotherapy treatment?

How will I know it is working?

Will I get side effects, and how long will they last?

What help can I have to manage side effects?

Who do I contact if I feel unwell at home?

Can someone come with me to the appointments?

How can I help myself during treatment?

Can I carry on working?

Who can I ask if I have any questions?

If your cancer is diagnosed at a very early stage you may not need chemotherapy after surgery.

If you do need it, you will be offered chemotherapy when you have recovered from your surgery. This usually involves a cycle (dose) of chemotherapy drugs every three weeks for six cycles, lasting 18 weeks.

Sue says “I was terrified of chemotherapy! I asked my sister to come and hold my hand when I had my first treatment in case something awful happened, because I felt safer with her there.

“But it wasn’t as bad as I expected. It wasn’t very nice in the first week after treatment, like a dose of flu with added extras. But I survived it, and recovered each time, ready for the next treatment.”

When you have finished the three cycles of chemotherapy, you will be reviewed. You may have another scan to see how much the tumour has shrunk. If it has reduced enough to make successful surgery possible then your operation will be arranged.

The operation will aim to take out as much of the cancer as possible. This can mean it will remove your ovaries (sometimes an unaffected ovary can be left), fallopian tubes, womb, cervix, and omentum (a layer of tissue across the abdomen). It may be necessary to remove parts of the bowel too.

After your surgery you may be in hospital for three to four days and then continue your recovery at home. If you have needed more extensive surgery, you may need to stay in hospital for seven days or more.

Mary says: "The surgeon came to see me the morning after the operation and said he couldn’t be more pleased. Almost all the tumours had disappeared and even the ones that remained had reduced in size (after chemotherapy). I had a bit of trouble with nausea and vomiting and felt weak, but I made a good recovery and was discharged a week later."

Chemotherapy after surgery

If you had chemotherapy before your operation, you will need a further three cycles afterwards. You can start these once you are fit enough after surgery.

If you had your surgery first, to be followed by chemotherapy, you are likely to be offered a cycle (dose) of chemotherapy every three weeks for six cycles, which lasts for a total of 18 weeks.

If any of the cancer remains after surgery, your doctor may suggest using bevacizumab (Avastin).This is a targeted treatment that can reduce the tumour’s blood supply. This can delay a recurrence of the cancer.

You may be offered other drugs that are maintenance therapies. These can prevent or delay the cancer coming back. They include PARP inhibitors such as olaparib, niraparib, and rucaparib. They act on the cancer’s DNA to stop it repairing itself.

See more information about targeted therapies here.

Lynne says: “I got through it all with wonderful support from my family, friends and medical staff. The cancer support centre in the hospital grounds was always there with a cuppa and a friendly face to talk to.”

At the end of your treatment

At the end of your chemotherapy or maintenance therapy, you may have a scan and then a programme of regular follow-up appointments.

These may be face to face or using the telephone or online. You will be asked about your health and then have a blood test. If you develop further symptoms, you may have a scan.

Some people find follow-up appointments make them anxious. It can be hard to adjust when you have longer between appointments, so you are monitored less often. You may feel uncertain about your health and have a lot of questions.

You can still speak to your clinical nurse specialist (CNS) or call the Ovacome free support line on 0800 008 7054.

You can ask...

How will I be followed up, and for how long?

What further investigations may be done?

What should I be looking out for?

Who can I contact between appointments?

How long will it take to recover?

Can I use HRT (Hormone Replacement Therapy)?

What local support is available for me?

Helping yourself

When you are told you have cancer, you may feel frightened, alone, and angry. This is understandable, but these feelings can sometimes overwhelm you and stop you carrying out your usual activities.

Sometimes people develop depression abut their diagnosis or during their treatment, causing poor sleep, tiredness, loss of appetite, tearfulness, and sadness. If this happens to you, it is important to know that help is available.

Your GP or clinical nurse specialist (CNS) should be able to put you in touch with a counsellor trained to listen and understand your thoughts and feelings.

Family and other people

The people around you may respond in different ways to your diagnosis. You may find that other people avoid talking about your illness and treatment. Sometimes this includes family members too.

They may try to be over-cheerful, sometimes because they don’t know what to say and are afraid of upsetting you.

You can respond by saying how you feel and ask to talk. Or you can say that things are hard right now, and you don’t want to talk at the moment.

People may urge you to stay strong and positive, but you should not feel guilty if you can’t do this all the time.

See more information about talking to other people here.

Support groups

No matter how close your friends and family are to you, it can be helpful to talk to people going through similar experiences. It can be reassuring to speak to some one who has also had cancer treatment. It can be chance to talk through some of your worries that you don’t want to mention to your family or friends in case you upset them.

Ovacome offers a range of support groups and one-to-one services including a free support line on 0800 008 7054.

There is information on the Ovacome website including our support groups and events and a list of local support groups. Ovacome has a lively online community that you can join here.

Self help

This can involve relaxation, complementary therapies such as reflexology and massage. Do check with your medical team before starting a new therapy, diet or supplement.

See more information here:

Samixa says: “I am very happy to say that more than 12 years after presenting to my GP, I am feeling stronger mentally and physically and have accepted that my life will never be the same as before my ovarian cancer. I have learnt to let go of the small stuff and enjoy the precious time I have been given since my diagnosis.”

If you would like more information on the sources and references for this page, or if you would like to discuss anything about ovarian cancer, please phone our support line on 0800 008 7054 Monday to Friday between 10am and 5pm.

Booklet text reviewed by Gordon Jayson PhD FRCP Professor of Medical Oncology, Christie Hospital and University of Manchester.

V.3.8. Last updated May 2023, due for review May 2024

Disclaimer: Ovacome booklets provide information and support. We make every effort to ensure the accuracy and reliability of the information at the time of printing. The information we give is not a substitute for professional medical care. If you suspect you have cancer you should consult your doctor as quickly as possible. Ovacome cannot accept liability for any inaccuracy in linked sources. Rights reserved.

Did you find this page helpful? We welcome your feedback. If you have any comments or suggestions, please email [email protected] or call 0207 299 6653.