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Content:

Ovarian cancer is uncommon with around 7000 people diagnosed for the first time every year in the UK.  Some of them never meet another person who has the same diagnosis, so having ovarian cancer can be a very isolating and frightening experience.

The role of support groups

Meeting other people in a similar situation can be reassuring. It can powerfully demonstrate that those living with ovarian cancer can respond to treatment and go on to lead fulfilling lives.

Support groups are a place where you can share knowledge and experience which can be very comforting.

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Ovacome support groups    

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Who runs the groups?

You may have an ovarian cancer support group near you.  It may be organised and run by a local cancer nurse specialist (CNS) and largely hospital based.  Other groups are started by people with ovarian cancer and do not have formal input from health professionals.  They might be at someone’s home, in a community space or online.

You may have a cancer support centre near you, such as a Maggie’s Centre.  Maggie’s offers support groups, complementary therapies advice and information for anyone affected, which includes friends and family. 

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Choosing a group

Support groups take many forms.  Some are very general and open to people diagnosed with different cancer types.  Others are more specialised and focus on specific groups such as people with gynaecological cancers.  You may be looking for a group focussed on ovarian cancer.

Since the covid pandemic most support groups have been meeting online, it seems likely that some will continue with this.

Online meetings can be for people across the country and even across the world.  This can work well for people with rarer forms of ovarian cancer who seldom meet other people with the same diagnosis.

Meeting online can also mean being able to take part in your own home, without having to travel, even if you are unwell.

But on the other hand, you may need to be confident in using technology and need equipment and some training. It can be harder to get to know people without meeting them in person.

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What are the pros and cons?

Support groups can give you confidence, shared knowledge and experience.  This can help you learn to manage your cancer, communicate with health professionals, and get the best out of your treatments. 

Joining a support group can make the negative experience of an ovarian cancer diagnosis into a more positive one.  It can reduce feelings of isolation and give you the experience of belonging in a safe space.

Ovacome members tell us that the benefit they value most is being able to talk openly about their cancer with others who share the experience.

However, as well as getting support yourself, there may be an expectation of giving it to others as well.  Also, while you will meet people who are coping well and maintaining good health, you will at some point meet those who are not.  It can be difficult and disheartening to see people experience recurrences and further treatment.

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Tips for attending a support group

  • You can find out more before you go along by contacting the organiser who can tell you about the size of the group and the format of meetings – for instance whether they have speakers or whether members are invited to talk about their experiences.
  • If you feel nervous about attending, ask if you can bring a friend or family member to support you. Let the organiser know if you prefer not to speak.

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    Support lines

    You can use the Ovacome support line, call free phone 0800 008 7054 or email [email protected] as a source of help and emotional support on any issue around ovarian cancer. 

    We can text/WhatsApp on 07503 682 311, instant message through our website, or arrange a videocall with you.

    We can tell you details of support groups near you. 

    Ovacome’s support service is open on weekdays from 10am to 5pm.  At other times you can call Macmillan cancer support on 0808 808 0000 which is open until 8pm; or the Samaritans on 116 123 which is open 24 hours seven days a week.

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    Ovacome's support for you

    Online communities can offer friendship and shared experiences which can be positive and helpful.  Some people like to use these when they need support with problems caused by their cancer, and then have less contact when the crisis is over.  This means forums can sometimes be less likely to include positive experiences of being well.

    Online communities have the advantage of being available at all times. Look for a community that is moderated and protects its members.  

    Our My Ovacome online forum is a lively and supportive community that is moderated by our support team to provide information and ensure the safety of members. 

    Ovacome also offers a whole programme of online activities and events called Staying Connected.  This includes online support groups for those diagnosed aged 45 or under, people with rarer forms of ovarian cancer, a family and friends group, a bereavement group, a stoma group and end of life matters group.

    Staying Connected also offers talks and workshops, craft sessions, a Friday chat session, a virtual choir and gentle exercise sessions.

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    Other forms of support

    You may want to look at other sources of support such as counselling, or psychotherapy.  Your GP or clinical team will be able to refer to these services.

    Counselling involves talking to a trained therapist, either one-to-one, in a group, or with your partner or family. It allows you to look deeper into your problems and worries, and deal with mental health issues, such as depression and anxiety.

    Psychotherapy usually involves talking to a therapist, but sometimes other methods may be used; for example, art, music, drama, and movement. It can help you discuss feelings you have about yourself and other people, particularly family and those close to you. Sometimes couples or families can be offered joint therapy sessions together.

    You will usually meet your therapist regularly; this may be online. Individual sessions usually last about 50 minutes.

    There are many different approaches to counselling and psychotherapy.  For more information see the links below.

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    Useful links

    British Association of Counselling and Psychotherapy

    Cancer Counselling London

    Relate

    CRUSE bereavement support

    Macmillan information on ‘chemo brain’

    Maggie’s Centres are staffed by Cancer Support Specialists, Benefits Advisors, Nutritionists, therapists and Psychologists, all providing support in whichever way best suits you.

    Macmillan Cancer Support lists local centres and support groups.

    My Ovacome forum

    Cancer Support UK provides practical and emotional support to people living with cancer, both during and after the treatment period across the UK by telephone.

    Penny Brohn UK run a range of free services including courses, groups and individual therapies designed to help you feel better and live better with cancer, its treatments and side effects.

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    If you have any questions or need any further information please contact our support service team on 0800 008 7054 or email [email protected]

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    Written by:Anna Hudson, Head of Support Services, Ovacome

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    Disclaimer: Ovacome briefings are designed to provide information, advice and support about ovarian cancer to patients and the public. Whilst Ovacome makes every attempt to ensure the accuracy and reliability of the information contained in the briefing, it is not a formal legal document. The information provided is accurate at the time of printing. It is not a substitute for professional advice. Ovacome cannot accept liability for any inaccuracy via third party information from sources to which we link. Rights reserved.