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Ovacome is a national charity providing advice and support to women with 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 fact sheet is for women whose ovarian cancer has come back after initial treatment.  It describes what further treatments may be available.

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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 signs of disease on a scan, but 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 allows 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.

 

 

 

Diagram of the female reproductive system

 

 

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. 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.

  1. 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) of 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?

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Can I have more surgery?

Early results of a clinical trial that treated some women with recurrent ovarian cancer by further surgery were reported in 2017.  The trial, called DESKTOP 3, recruited women with their first recurrence and the results showed that those who fulfilled certain criteria benefitted from having a second operation before having platinum based chemotherapy.

The women in the trial had to have had all visible signs of ovarian cancer removed at their first surgery; their cancer had to have returned more than six months after the end of their first line chemotherapy; they did not have ascites (fluid in the abdomen) and they had to be otherwise physically well.  The trial showed that for women in this group the second surgery followed by chemotherapy resulted in a significant delay in the cancer returning.

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.

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Targeted therapies:  PARP inhibitors

Some women carry a fault on a gene that can increase their risk of developing breast cancer and ovarian cancer.  These are the BRCA genes and the fault can be inherited and show up as a family history of cancer which affects men and women across  generations.  Women with ovarian cancer are increasingly being offered testing for these gene faults.  If you are found to be affected you may be offered treatment by a drug called a PARP inhibitor.  The genetic fault enables these drugs to interfere with the cancer’s DNA and stop it from repairing itself and growing.

Olaparib and niraparib are PARP inhibitors which may be available.  These are taken as tablets after later courses of chemotherapy.

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Bevacizumab (Avastin)

Avastin works by interfering with the cancer’s blood supply.  It may be 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.

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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.

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Immune therapy

Some trials are researching immunotherapy drugs which aim to boost your immune system to resist the cancer.  These drugs are not licensed for use with ovarian cancer as their benefits in this illness are not yet defined.  They can only be accessed through taking part in clinical trials to test them. 

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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're 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.

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 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.

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.

Some of the advantages and disadvantages which you may want to think about before you decide whether you want 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.

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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 they will 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.

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?

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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, The Patients Association. 

If you want to discuss treatment options please call Ovacome’s support line on 0800 0087 054 Monday to Friday 10am-5pm.  You may also want to talk to your oncology nurse.

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

If you would like to discuss anything about ovarian cancer, please phone our supportline on 0800 008 7054 Monday to Friday between 10am and 5pm.

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

Disclaimer 

Ovacome fact sheets 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.

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Date last updated May 2018

Date for review May 2020