Support and information glossary

Support

An ovarian cancer diagnosis can have a profound effect on many aspects of your life. It's important that you feel supported throughout your cancer journey, and know where to go for guidance and information. Here is a list of expert groups and organisations who can help women and their families with all aspects of a cancer diagnosis. 

General support and information

Ovacome

Ovacome is the national UK ovarian cancer support charity that provides support and information to everyone affected by ovarian cancer. 

The Ovacome Support Line is available Monday-Friday, 10am-5pm. Call 0800 008 7054 for information and emotional support on all aspects of ovarian cancer. 

My Ovacome forum is an online community for anyone affected by ovarian cancer. It is a safe and supportive space for women with ovarian cancer, and their friends and families to share their experiences, and offer each other encouragement, knowledge, understanding and friendship. 

Ovacome also hold regular support events for women diagnosed with ovarian cancer and their families. These include regional support events, The Ovacome Choir and Health and Wellbeing Days. Click here to find out more. 

You can email Ovacome at support@ovacome.org.uk, text on 07427390504, and Skype at ovacome.support. 

Macmillan Cancer Support

Macmillan offers a wide range of support including information, support centres, online communities and an advice line. Their website features a search facility where you can type in phrases such as 'talking to children', 'work and cancer', 'if you are self-employed' and 'benefits and advice' to get more information on these topics. 

You can call Macmillan's Support Line for free on 0808 808 00 00 (7 days a week, 8am-8pm). 

Maggie's

Maggie’s centres provide free practical, emotional and social support to people with cancer and their family and friends including practical advice about benefits and eating well, emotional support and places to meet other people. 

Maggie's Online Centre offers the same free practical, emotional and social support.

You can call Maggie's on 0300 123 1801 or visit one of their 21 centres which you can find here

Paul's Cancer Support Centre

Paul's Cancer Support Centre is a London charity that offers a range of community-based care and support services to help people affected by cancer. Visit their website to find out more, or contact their Wellbeing and Support Officers on 020 7924 3924 (between 10am-1pm and 2pm-5pm, Monday to Friday) or at support@paulscancersupport.org.uk

Talking about your diagnosis

Macmillan Cancer Support

Macmillan has excellent guides on talking to children about cancer. Search 'talking to children' at www.macmillan.org.uk

Fruit Fly Collective

Fruit Fly Collective provides The Cancer Cloud Kits, a group of toolkits created for children, or young people, who are affected by a parent being diagnosed with cancer. 

Younger women

Shine Cancer Support 

Shine Cancer Support is supporting young adults in their 20s, 30s and 40s living with any type of cancer diagnosis. Shine creates tailored events and get togethers allowing people to meet with others in a relaxed way.  

The Willow Foundation

The Willow Foundations is a national charity that provides psychological and emotional support for seriously ill 16 to 40 year olds through the provision of special day experiences. Every special day aims to provide them and their loved ones with a break from the realities of their diagnosis and treatment. Spending quality time with family and friends can help restore a sense of normality, boost confidence and create precious memories for the future. 

A Younger Woman's Guide to Ovarian Cancer 

A Younger Woman's Guide to Ovarian Cancer is a booklet for women diagnosed with ovarian cancer at a younger age. Created by Ovarian Cancer Action, Ovacome, Target Ovarian Cancer and The Eve Appeal, the guide deals with the physical, psychological and emotional effects of diagnosis and treatment. It features expert advice and stories from women who have experienced ovarian cancer at a younger age. Dealing with your diagnosis and telling others; body image and sexuality; and where to go for practical and financial support are all addressed in the guide.

Early menopause

The Daisy Network

The Daisy Network is a support group for women who have experienced a premature menopause. They aim to provide a support network of people you can talk to, allow members to share information about their personal experience of premature menopause, provide information on treatments and research within the fields of HRT and assisted conception and raise awareness of the condition among GPs, the broader medical community and policy makers. 

The Menopause Exchange

The Menopause Exchange gives independent advice about the menopause, midlife and post-menopausal health. They send out a free quarterly newsletter with useful impartial help and support. 

Menopause Matters

Menopause Matters is an independent website that provides up-to-date information on the menopause, menopausal symptoms, and treatment options. 

Fertility and family planning

The Human Fertilisation and Embryology Authority (HFEA)

The Human Fertilisation and Embryology Authority regulates and licenses fertility clinics. You can find out more about IVF techniques, how long treatment may take, how to find a clinic and the costs on their website

The Hysterectomy Association

The Hysterectomy Association aims to provide clear, concise information about hysterectomy and related issues for women undergoing, or planning to undergo, surgery. This is to ensure that women make informed choices about their surgery. Visit their website to find out more. 

British Intelligence Counselling Association

The British Infertility Counselling Association (BICA) is the professional association for infertility counsellors and counselling in the UK and can help find a counsellor near you.

Surrogacy UK

Surrogacy UK is a charity that provides information and support to help those going through surrogacy. They also have a community of surrogates, intended parents and families, with social events most weekends. 

CoramBAAF Adoption & Fostering Academy

CoramBAAF is an independent membership organisation for professionals, foster cares and adopters, and anyone else working with or looking after children in or from care, or adults who have been affected by adoption. 

Living well with cancer

Curve.life

Curve.life is a great online resource home to lots of information on a range of topics that helps cancer patients feel better and live longer, whatever the prognosis. The information is easy to understand, based on the latest research, and focused on the things that patients and their families can do alongside their medical team to help them live well.

Look Good Feel Better 

Look Good Feel Better in an international cancer support charity that helps boost the physical and emotional wellbeing of people undergoing cancer treatment. They offer support around managing the visible side effects of cancer, running free confidence boosting Workshops for anyone undergoing treatment for any cancer type. Workshops and Masterclasses are available in hospitals, cancer support centres and community groups across the UK.

Look Good Feel Better has also created lots of printed materials and online tutorials for those unable to attend a session or would like extra advice. 

Penny Brohn UK

Penny Brohn UK is a Bristol charity offering complementary cancer care. They offer Living Well services in locations throughout the country

The Untire App - beating cancer fatigue

Untire is a free self-help app that supports cancer patients and survivors with cancer-related fatigue (CRF) – a condition experienced by many patients undergoing cancer treatment or in recovery. The app features lots of useful videos, tutorials and daily tips to help patients understand and regain their energy levels. You can download Untire from the NHS Apps Library

Work and finance

Macmillan Cancer Support

Macmillan has lots of information about managing your work with a cancer diagnosis. Visit their website for a range of up-to-date information. You can also visit a local centre or call their free support line on 0808 808 000 (7 days a week, 8am-8pm). 

Maggie's Centres 

Maggie's offers confidential advice about benefits you may be entitled to. You can contact a Maggie's Benefits Advisor at your local Maggie's Centre or online

Citizen's Advice 

Citizen's Advice provides free independent and confidential advice online and in over 3,500 locations in the UK. 

GOV.UK

The UK Government website has a section dedicated to disability-related financial support. The information covers a wide range of support, including benefits such as Employment and Support Allowance (ESA) the Blue Badge for parking. 

Genetic risk

Ovarian Cancer Action

Our online BRCA Hub has everything you need to know about hereditary ovarian cancer and BRCA gene mutations. If you have any questions please contact Nafisa Sayani at brca@ovarian.org.uk or call on 0207 380 1730. 

Our Hereditary Cancer Risk Tool will assess your risk of having inherited a genetic mutation that could increase your risk of developing certain cancers. It's suitable for both men and women. 

Jnetics

Jnetics is a charity dedicated to improving the prevention, diagnosis and management of Jewish genetic disorders. They raise awareness and help anyone affected and at risk to access the best information, services and support available. To learn more about the charity email info@jnetics.org, call Jnetics London on 020 8123 5022 or call Jnetics Manchester on 0161 240 6240.

Support groups in your area

BRCA Kent

BRCA Kent is a local, voluntary-led group to support women in Kent with the BRCA 1/2 gene mutations. This group offers experience, support and friendship in a safe and caring environment.

The support group runs at two locations on different days each month between 7-9pm:

  • KIMS Hospital (Kent Institute of Medicine & Surgery), Weavering
  • The Abode Hotel, Canterbury

Please email info@brcakent.org.uk before attending. For more information visit:

  • Twitter: @BRCAKent (closed group)
  • Facebook: BRCA Kent (closed group)
  • Instagram: brcakent

BRCA Brighton Support Group

This group meets once a month at the Macmillan Horizon Centre in Brighton and is a self-support group for women of all ages in Sussex who have tested positive for the faulty BRCA1/2 gene. The group shares knowledge and experience and offers support in a confidential and friendly environment. It also has visiting speakers. 

Some group members have had, or are considering, risk reducing surgery whilst others have decided to choose regular surveillance as a way forward. 

There is a Facebook page you can join – BRCA Brighton (members have to send in a request to be approved).

For further details please contact BRCAbrighton@gmail.com.

FORCE- Essex

FORCE is a US-based group with a branch in Essex who have group meetings for members. 

BRCA Umbrella

BRCA Umbrella is an online support forum for men and women with a hereditary risk of cancer. There are local branches that hold support groups in the following areas: Edinburgh; Glasgow; Paisley; North Yorkshire; Manchester; Birmingham; Bristol; Hertfordshire/North London; and Liverpool (independent group). 

BRCA Link NI

BRCA Link NI is a voluntary organisation in Northern Ireland that helps people access information and support about BRCA genetic mutations. They hold both formal and informal group meetings throughout the year. For more information, email at info@brcani.co.ukor visit their Facebook group

Online support

BRCA Umbrella

An online support forum for men and women with a hereditary risk of cancer. For more information email at caroline.presho@brcaumbrella.org.uk

Genetic Alliance

Genetic Alliance is a charity working to improve the lives of patients and families affected by all types of genetic conditions. For more information email contactus@geneticalliance.org.ukor call 020 7831 0883. 

FORCE - Facing Our Risk of Cancer Empowered

A US-based group with a brance in Essex, UK, proving information and support for those affected by hereditary breast, ovarian and related cancers. Click here to find out more. 

Breast Cancer Care

The 'Someone Like Me' Service matches people to others in a similar situation to theirs. Click here to find out more. 

The Daisy Network

The Daisy Network provides support to women, along with their families and partners, who have been through a premature menopause. They provide a support network of people to talk to as well as information on HRT and assisted conception. Email at info@daisynetwork.org.uk

Jewish cancer care

Chai Cancer Care

Chai Cancer Care provides comprehensive, professional and expert services to any member of the Jewish community affected by cancer - patients, their families and friends. They have ten sites across the UK. For any inquiries please call 0208 202 2211.  

Local care and support 

Macmillan Cancer Support 

Macmillan has local information and support centres all over the UK. The centres have a team of experts and trained volunteers who can help answer your questions. You can also find free information booklets, leaflets and other sources of information. Use Macmillan's local area search to find your nearest centre and  support group. 

Maggie's Centres

Maggie's offers free practical, emotional and social support to people with cancer and their families and friends. Visit one of their local centres, which you can find here

Cancer Care Map

Cancer Care Map is an online directory, developed by Dimbleby Cancer Care, that helps people find cancer care and support services in their local area.