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Ovacome is a national charity providing support to those affected by ovarian cancer.  We give information about symptoms, diagnosis, treatments and 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 booklet is part of a series giving clinical information about ovarian cancer.

It is for those whose ovarian cancer has come back after initial treatment. It describes what further treatments may be available and how to get a second opinion.

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Why has my cancer come back?

Ovarian cancer is usually treated with surgery and chemotherapy. This is first line treatment.  Sometimes this is not completely successful and the cancer does not respond, or it comes back. This is called a relapse or a recurrence, and you will need further treatment to keep the cancer under control. 

We do not know what causes cancers to return. You may have signs that your cancer has come back, such as a rising CA125 level and/or signs of disease on a scan.

Sometimes you might have symptoms that are like the original symptoms you noticed, such as bloating. However, in some cases you might have no symptoms.  In this situation your medical team may suggest waiting until you do experience symptoms before starting any treatment. This is because research has shown that starting treatment before symptoms develop does not improve the treatment’s results.

Waiting for symptoms to begin can allow you to maximise the time between treatments and have a longer time of feeling well. If you find it too worrying to wait for symptoms to show before beginning treatment, you can discuss this with your medical team.

Recent evidence has suggested that in some cases a second operation might be helpful to you. This is described below. If your cancer has returned you might wish to discuss this with your oncology team, even if you don’t have symptoms yet.

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How is a relapse treated?

Your second treatment will depend on how successful the first treatment was.  This is judged by how long the cancer has taken to come back.  Relapsed ovarian cancer is put into one of two different groups, depending on how well it responded to the first line of treatment. 

The groups are:

  1. Cancer that has come back less than six months after finishing first line platinum-based chemotherapy such as carboplatin or cisplatin. This is called platinum resistant cancer
    1. If the cancer never responded to platinum-based chemotherapy this is called platinum refractory ovarian cancer. In these situations, your oncologist will discuss treatment options with you such as paclitaxel (Taxol) or liposomal doxorubicin (Caelyx), or suggest you try new treatments that may be available in a clinical trial. Some centres offer weekly chemotherapy treatments for platinum-resistant ovarian cancer.

    2. Cancer that responded to first line platinum chemotherapy, which has come back more than six months after the end of treatment, is platinum sensitive ovarian cancer. Usually cancer that returns more than six months after chemotherapy is treated with platinum-based chemotherapy plus another drug such as paclitaxel (Taxol) or liposomal doxorubicin (Caelyx). Your doctor may suggest adding additional drugs that are available in a clinical trial.

    You and your oncologist will also consider other issues to help decide which drug should be used in the second line treatment.  

    These issues are:

    • How did your illness respond to the drugs before?
    • What are the drug’s possible side effects? You may prefer to avoid drugs that cause numbness in your fingers and toes (neuropathy) or which can cause hair loss.
    • Do you have an allergy to platinum-based drugs?
    • What are the likely benefits of the second line drug?

    If you have completed treatment for platinum-sensitive ovarian cancer and tests show the tumour has shrunk and your CA125 has gone down, you may be offered a PARP inhibitor to keep the cancer under control. These are drugs that stop damaged cancer cells repairing themselves.  They can be taken at home as maintenance therapy.

    Research shows that PARP inhibitors are helpful when they are used once. If you already used them after your first line chemotherapy you will probably be offered an alternative.

    PARP inhibitors such as Olaparib and Niraparib are also used to treat women affected by the BRCA gene mutation.  You can learn more about BRCA and these drugs here: www.ovarian.org.uk/ovarian-cancer/brca/

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    Can I have more surgery?

    Some patients whose ovarian cancer has recurred have had secondary surgery.  A research trial called DESKTOP 3 has looked at the benefits of having another operation and found that it can help patients in certain circumstances.

    The women in the trial had platinum-sensitive ovarian cancer which had recurred.  They were otherwise fit and well.  Their previous surgery had completely removed all the visible cancer and they did not have ascites (fluid in the abdomen).

    One group was treated with chemotherapy alone, a second group had surgery followed by chemotherapy. Results show that the women who had surgery and chemotherapy lived an average of eight months longer than those who had chemotherapy alone.

    However, this benefit was seen only when the second surgery had been able to remove all of the recurrent tumour.  There was no benefit to women whose tumours were partly removed.

    This means surgery for recurrent ovarian cancer may be considered if:

    • The cancer has come back at least six months after previous treatment. This is platinum-sensitive recurrent ovarian cancer.
    • You feel fit and well.
    • You have little or no ascites (fluid) in your abdomen.
    • Your first surgery removed all visible tumour.
    • Your surgeon expects a further operation to be able to remove all the visible tumour.

    We don’t know if this second operation will improve the overall outcome for patients, and the full results haven’t yet been published.  Early results suggest it does postpone a further recurrence, so if you meet the criteria you could discuss the possibility of this surgery with your consultant.

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    Are other treatments available?

    Hormonal treatments

    If you don’t want to have chemotherapy again you may want to discuss hormonal treatments with your oncologist.  We know some drugs such as tamoxifen and letrozole can control cancer by blocking hormones.  These drugs can cause menopause symptoms such as hot flushes and vaginal dryness.  Letrozole can thin bones and your bone density needs to be monitored if you use this drug for a long time.  You can ask your GP to arrange a dual-energy X-ray absorptiometry (DEXA) scan to measure your bone density.

    Targeted therapies: Bevacizumab (Avastin)

    Avastin works by interfering with the cancer’s blood supply.  It is available to women being treated for advanced (stage 3 or stage 4) ovarian cancer and can be taken alongside carboplatin and Taxol chemotherapy. Avastin can be used for as long as it controls your cancer, even after your chemotherapy is completed.

    It is given every two to three weeks and can be taken for up to 18 cycles.  Avastin is currently available as a first line treatment for ovarian cancer.  You may have to pay for it or use insurance to access it for second line and subsequent treatments. 

    Clinical trials

    Clinical trials research new treatments for ovarian cancer.  Most trials have strict  guidelines on who can take part.  You might want to talk to your oncologist to see if there is a trial that is suitable for you.  You will need to discuss the risks and benefits of taking part.  You can also call Ovacome’s free support line on 0800 008 7054 or email [email protected] for information about current trials.

    Immune therapy

    There is on-going research into immunotherapy drugs that can boost the immune system to resist cancer.  So far the results for ovarian cancer have not been promising.  Further trials are testing combinations of immunotherapies with PARP inhibitors or Avastin to see if that is more effective.  

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    Getting a second opinion

    A second opinion is when you see another doctor for their opinion on your diagnosis and treatment. Usually it means you’ll see a different hospital specialist from your current one.

    You might seek a second opinion if you are concerned about your diagnosis or the treatment you’ve been recommended.  Anyone can ask for a second opinion. You can have one on the NHS so you don’t have to pay, or you can choose to have one privately.

    Access to second opinions may be affected by hospital measures to control COVID 19. 

    Some of the reasons for requesting a second opinion:

    • You may have doubt about your diagnosis.
    • You may not understand the information you've been given.
    • You may not be happy with the treatment that is recommended.
    • You may not feel you can talk to your doctor or specialist about your diagnosis and treatment.
    • You may need to confirm that the treatment you are receiving is the right treatment for you.
    • You have been told that there are no further treatments for you and would like to have that opinion checked.

    Before asking for a second opinion, it’s worth asking your consultant to go over your diagnosis and explain anything you don't understand.  If you're unhappy with your diagnosis or would like to consider a different course of treatment, discuss this with them.  Your consultant should be happy to explain things and in many cases, there may be no need for a second opinion.

    Here are some of the advantages and disadvantages to think about before you decide about a second opinion:

    Possible advantages:

    • If both doctors are in agreement about your diagnosis and treatment this will help you feel more confident about their decision.
    • You may find that you get on better with a different doctor and have more confidence in what they say.
    • You may be offered a treatment that has not been suggested before, or a newer treatment that’s part of a clinical trial
    • You may be offered a wider choice of treatments by the second doctor, so you can decide which treatment to have.

    Possible disadvantages

    • Having a second opinion doesn't mean you'll be seen or treated more quickly than anyone else. Your treatment may be delayed by waiting to see another consultant.  The person you see for a second opinion will also need to get information from your first doctor, which can delay treatment.  You may need to think carefully about having a second opinion if a delay is likely to be harmful to you or reduce your chances of successful treatment.
    • You may find it upsetting being told the same or different news about your diagnosis and treatment if it’s not what you were hoping for.
    • If you're offered a different treatment, you may be asked to decide which treatment to have. Some people find this difficult and worry about whether they will make the right decision.  However, it’s important to remember that there’s no right or wrong decision.
    • You may have to travel some distance to a different hospital to see another specialist and you may then need to have your treatment at that hospital. This might not be easy for you or your family and may mean you have extra travelling costs.

    How to get a second opinion

    There are different ways of seeking a second opinion from a hospital consultant or specialist.  You can ask your GP to refer you to another consultant or specialist, either on the NHS or privately.  Or you can ask your current consultant or specialist to refer you for a second opinion.

    People often worry that this will upset the specialist or that you would be seen as a bad patient.  However, many doctors, consultants or other specialists will be happy to refer you for a second opinion if it will be helpful. They will be used to being asked for second opinions themselves.

    Relatives and carers can also request a second opinion on your behalf, but only with your consent.  Some people do their own research to find the name of a consultant they think they'd like to see.

    When you are referred for a second opinion, any relevant medical information will be sent to the new doctor or specialist.  This information will include your scan, test results and any previous treatments. 

    If, after your second opinion, you want the second doctor, consultant or specialist to treat you, this will have to be formally arranged with them.

    It can help to prepare for your appointment by thinking about what you want to get out of it.  You could write questions and take them with you.  It can also help to have someone else go with you.

    Here are some questions you may want to ask:

    If the second opinion differs from the original one, why?

    Are there other treatments I could have?

    What are the side effects of these other treatments?

    What impact might the treatments have on my life?

    How long will I need to be treated for?

    Will I need to have my treatment at another hospital?

    Difficulty getting a referral for a second opinion

    If for some reason you find it difficult to get a referral for a second opinion, the Patient Advice and Liaison Service (PALS) in your local hospital may be able to help. You can get the phone number of your PALS team from the hospital switchboard. Alternatively, your local Citizens Advice Bureau (CAB) may be able to advise you. Other organisations and resources include: Macmillan Cancer Support, NHS choices and The Patients Association. 

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    If you want to discuss treatment choices please call Ovacome’s support line on 0800 008 7054, Monday to Friday 10am-5pm. We can help you prepare for discussions with your medical team. You may also want to talk to your oncology nurse.

    If you would like more information on the sources and references for this booklet sheet, please call us on 0800 008 7054.

    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.

    You can also visit our website at www.ovacome.org.uk

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    Reviewed by Gordon Jayson PhD FRCP Professor of Medical Oncology, Christie Hospital and University of Manchester

    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.

    v 2.3

    Date last updated May 2020

    Date for review May 2022

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