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Resources and organisations

Organisations, support groups, books, videos and more to help you cope with vulval cancer.

Cancer Research UK information and support

Cancer Research UK is the largest cancer research organisation in the world outside the USA. We are the European leader in the development of new anti-cancer drugs. We fund research on all aspects of the disease from its causes, to treatment and prevention, education and psychological support for patients.

We are also committed to producing high quality information for people affected by cancer, health professionals and the general public. We do this through the About Cancer pages on our website, our news and resources, and our range of health awareness leaflets.

Cancer Chat is our free online discussion forum for people affected by cancer. It is a safe space to talk to other people in similar situations, and find information and support.

If you have a question about cancer, you can contact our team of specialist cancer information nurses. Call free on 0808 800 4040, 9am to 5pm, Monday to Friday. To talk in your preferred language, ask for our interpreting service. Or you can send us a question online.

Specific women's cancer organisations and sites

Jane Bramley
Tel: 01977 640243

Jane is an ex-patient who has had a radical vulvectomy. She is happy to talk to women who are going to have (or have had) a vulvectomy, as well as to their friends and families.

Phone: 0161 747 5911
Email: vacouk@yahoo.com

This UK organisation is run by women who have had vulval cancer. There is a support network, one-to-one telephone support and a website with useful information about vulval conditions.

This is the American National Cancer Institute’s patient information site. Its section on cancer of the vulva is detailed and comprehensive.

PO Box 7804
Nottingham
NG3 5ZQ

An information and support service for women with vulval pain and discomfort.

This is a national charity that offers information and support to anyone affected by lymphoedema. They run support groups, a helpline and a website. They also produce a range of information including 25 factsheets about lymphoedema and its treatment, 2 DVDs about self management techniques and a newsletter.

Tel: 020 7351 0990
Email: admin@lsn.org.uk 

General support organisations and sites

Macmillan Cancer Support is a charity that gives practical, medical and financial support to people with cancer. Its helpline gives guidance on cancer and advice on benefits. It also publishes booklets about cancer and treatments.

Phone: 0808 808 0000 (Monday to Friday, 9am to 8pm; information is available in other languages)

Textphone: 0808 808 0121

A helpline for lesbians and gay men, and their families and friends, giving advice, information and referrals.

Tel: 0300 330 0630 (10am - 10pm every day)

Switchboard LGBT+ helpline website

A patient led group that promotes understanding about pelvic radiation disease. Pelvic radiation disease is a late effect of radiotherapy treatment. They support patients and campaign for more research and better treatment for this condition.

Tel: 01372 744338
Email: info@prda.org.uk

Tel: 020 7486 7262 (Monday, Wednesday and Friday - 9am to 5pm)
Email: info@sexualadviceassociation.co.uk

Advice and leaflets on impotence and its treatment.

Phone: 01452 790178
Email: info@thebls.com

A charitable organisation. Members include health care professionals from various specialities and people who have an interest in ensuring that people with lymphoedema have access to the care and treatment that they need. Has a directory of lymphoedema specialist practitioners.

Gives information about the support and counselling that is available for people having difficulty with sex or relationships.

Phone: 020 8543 2707

Email: info@corst.org.uk

The Gynaecological Cancer Guide: Sex, sanity and survival

M Heffernan and M Quinn
Michelle Anderson Publishing, 2003
ISBN: 0855723327

An American book that deals with all aspects of gynaecological cancer. Gives concise information alongside women's own stories about their experiences.

Booklets and factsheets from other organisations

  • Understanding cancer of the vulva Read more at http://www.cancerresearchuk.org/about-cancer/type/vulval-cancer/vulval-cancer-reading-list#K0TufUYbbdrj598D.99
  • Understanding cancer research trials (clinical trials) Read more at http://www.cancerresearchuk.org/about-cancer/type/vulval-cancer/vulval-cancer-reading-list#K0TufUYbbdrj598D.99
  • Understanding chemotherapy
  • Understanding radiotherapy
  • Controlling cancer pain
  • Controlling the symptoms of cancer
  • Coping with hair loss
  • Diet and cancer
  • Lost for words – how to talk to someone with cancer
  • Pelvic radiotherapy in women – possible late effects (joint publication with Cancer Research UK)
  • Sexuality and cancer
  • Talking about your cancer
  • Talking to children about cancer

Information and help

Dangoor sponsorship

About Cancer generously supported by Dangoor Education since 2010.