There are lots of organisations, support groups and helpful books to help you cope with gestational trophoblastic disease (GTD) and its treatment.
Cancer Research UK
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.
General support and information organisations
This website offers support to women who have or have had a molar pregnancy. It gives information, and women can join the online support forum to share information and tips with other women.
Information on sexual problems that can affect both men and women. They provide lists of local specialist practitioners, as well as factsheets on problems such as erectile dysfunction (impotence).
Tel: 020 7486 7262
Tommy's is a research charity in the UK looking into miscarriage and pregnancy problems.
They have a helpline staffed by midwives and the website includes women's stories about molar pregnancy.
This national charity provides specialist units, support, education and information for teenagers with cancer and their families. They also fund research into young people's cancers.
The Trust holds annual conferences for teenagers with cancer and the health professionals who look after them.
Macmillan Cancer Support improves the lives of people affected by cancer. They provide practical, medical and financial support and push for better cancer care. They provide booklets on cancer and treatments and run a helpline providing cancer information and benefits advice.
89 Albert Embankment
Phone: 0808 808 0000 (Mon to Fri, 9am to 8pm – information available in other languages)
Textphone: 0808 808 0121
Specific symptoms organisations
There are two hospitals in the UK where women are treated for GTD. These hospitals offer specialist support and information on their websites.
This website is run by the specialist centre at Charing Cross Hospital in London. The website has information and useful contacts.
This website is run by the centre at Weston Park Hospital in Sheffield. It gives details about their drop in clinic, patient information and information for doctors and nurses.
Books about by patients
The personal story of a woman diagnosed with choriocarcinoma. She talks about the shock of living a normal life and suddenly being diagnosed with cancer. And having to make sense of the treatments and hospitals. The book also discusses the decisions she has to make and how the cancer affected her relationship with her family and friends.
Publisher: Jennifer Wood
This American book contains more than 30 personal stories about molar pregnancy and choriocarcinoma. It includes descriptions of the experience of being diagnosed and having treatment. The chemotherapy treatments mentioned differ from those used in the UK. The book is not available in general book shops.
Booklets and factsheets from other organisations
Updated in 2013 by Jan Everard
Available from Sheffield Trophoblastic Disease Centre, Weston Park Hospital, Sheffield.
Hydatidiform Mole and Choriocarcinoma UK Information and Support Service (Charing Cross Hospital, London)
Coping with hair loss (also on audiotape and CD)
Diet and cancer (also on audiotape and CD)
Lost for words - how to talk to someone with cancer
Sexuality and cancer (also on audiotape and CD)
Talking about your cancer
Talking to children about cancer (also on audiotape and CD)
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