The Guide to Internet Resources for Cancer website contains over 100 pages of links to cancer related information organised by disease, country, treatments, and other topics. The site includes web-based information for patients, family and the general public. Subjects include the following.
Organisations and Centres.
1 Bolingbroke Road
Tel: 01793 322005 Web: www.communigate.co.uk/wilts/gynaec
Best time to telephone: any reasonable time (answerphone also operates).
Gynae C offers a national confidential helpline for women who have, or have had, any form of gynaecological cancer. This service is also available to partners, families and friends for support, advice and information. (Please note that Gynae C is not a medical helpline: any queries directly regarding your current medical condition should be directed to your GP or consultant.) Features of the service are as follows.
The Helpline is run by women who have had a gynae cancer themselves.
Some literature - newsletter and leaflets - is available for any interested parties. Please send a stamped addressed envelope.
The service is free, as is membership, but voluntary donations are welcome.
Enquiries from health professionals and the media are also welcome.
HALT - Help Against Liver Tumours
Department of Surgery
North Manchester General Hospital
Tel: 0161 720 2612 Fax: 0161 720 2228 Best time to telephone: 9.00am - 5.00pm, Monday - Friday.
HALT is a Patients' Support Group for sufferers of liver tumours involving patients, their spouses/relatives, friends and Health Professionals. The group was formed in October 1994, when twelve patients who had undergone liver treatment under the care of Consultant Surgeon Mr David J Sherlock at North Manchester General Hospital and their partners, met to share their experiences and consequently found tremendous reassurance.
HALT is currently organised by a voluntary committee including patients, spouses and persons who have been involved with liver cancer. Activities include the following.
To hold meetings to enable members to get together and share their experiences and feelings with one another.
To offer support to patients during their stay in hospital.
To give information on where to go for counselling.
To make information from other cancer organisations eg Cancerlink and MACMILLAN.
To increase public and professional awareness of treatments for liver cancer.
To support treatment of liver tumours by voluntary fundraising.
International Myeloma Foundation
31 York Place
Tel (Helpline): 0800 980 3332 Tel (Admin): 0131 557 3332 Fax: 0131 556 9720
Web: www.myeloma.org.uk Best time to telephone: 9am - 5pm, Monday - Friday
The IMF (UK) is a registered charity which aims to assist those affected by myeloma and their families. It also aims to raise public awareness of the disease and to support work towards prevention and cure. The IMF (UK) provides information, education and support to myeloma patients, carers and health professionals. For further details or to request an information pack on Multiple Myeloma or AL Amyloidosis, please contact the above address.
Cervical Cancer Community - Jo's Trust
Tel: 01327 361787 Web: www.jotrust.co.uk
Jo’s Trust primary activity is providing online cervical cancer information and counselling. Their aim is to make your search for information about pre-cancer and cancer of the cervix both simple and effective. The Trust offer a facility where you can send a question to a medical panel of medical experts and counsellors. There is a Bulletin Board which is an open forum for you to communicate with other women and support one another through shared mutual experiences.
Kidney Cancer UK
50 Lower Pastures
Tel (Helpline): 024 7647 4993 Tel: 01536 741 391 Web: www.kcuk.org
Best time to telephone: 9.30am - 9.00pm, any day.
Kidney Cancer UK provides information and support to kidney cancer patients and carers and works with the medical profession to improve standards of patient care. KCUK is involved in the following activities.
Production of a regular newsletter.
2 Shrubbery Avenue
Careline: 0800 169 6680 (24hrs) Tel (office): 01905 330003 (office hours) Fax: 01905 330090
Leukaemia Care aims to promote the welfare of those suffering from Leukaemia and allied blood disorders. The Society provides friendship, support, limited discretionary financial assistance and all year round holidays via a network of volunteers throughout the UK. Membership is free and a newsletter is published twice a year.
Leukaemia Research Fund
43 Great Ormond Street
Tel: 020 7405 0101 Fax: 020 7405 3139 Web: www.lrf.org.uk
The Leukaemia Research Fund aims to "improve treatments, find cures and prevent all forms of leukaemia and the related blood cancers including Hodgkin's disease and other lymphomas, myeloma, the myelodysplasias and aplastic anaemia." The organisation is primarily involved in high calibre research and international collaboration and raises funds to these ends. However, the above web-site includes a comprehensive range of information for patients, which includes the following booklets.
Leukaemia and Related Diseases
Acute Leukaemia in Children
Coping with Childhood Leukaemia
Acute Lymphoblastic Leukaemia
Acute Myeloid Leukaemia
Chronic Lymphocytic Leukaemia
Chronic Myeloid Leukaemia
The Myelodysplastic Syndromes
Bone Marrow and Stem Cell Transplantation
The following leaflets are also available on the web-site: Amyloidosis; Burkitt's Lymphoma; Down's Syndrome and Leukaemia; Essential Thrombocythaemia; Fanconi Anaemia; Hairy Cell Leukaemia; Histiocytosis; Hypereosinophilic Syndrome and Eosinophil Leukaemia; Immune Thrombocytopaenic Purpura; Large Granular Lymphocytic Leukaemia; Mast Cell Leukaemia; Monoclonal Gammopathy of Unknown Significance; Myelofibrosis Paroxysmal Nocturnal Haemoglobinuria; Plasma Cell Leukaemia; Polycythaemia Vera; Prolymphocytic Transformation and Richter's Syndrome as complications of established CLL; Solitary Plasmacytoma; T-Cell Acute Lymphoblastic Leukaemia; Waldenstrom's Macroglobulinaemia; Factsheet on Splenectomy and Infection.
The Leukaemia Society
The Leukaemia Society (U.K.)
PO Box 6831
Tel: 020 8374 4821 or 020 8889 4663 Web: www.leukaemiasociety.org.uk
The Leukaemia Society (U.K.) is a charity that raises money devoted to the recruitment of volunteer bone marrow donors, research, education and patient care. The Society's range of services include the following:
Donor recruitment clinics.
Home and hospital visiting.
Some translation services - this is a limited service depending on volunteer availability.
Support Groups - most people find sharing their feelings can help. Being put in contact with individuals that have been through and understand how they are feeling allows them to do this.
Telephone helpline offering support to the patient and the patient's families and friends.
Advice line - people seek advice on various issues. One area where advice is always needed is claiming benefits. The society aim to help ensure that all individuals know of the benefits they are entitled to and how to claim them.
Lymphoedema Support Network
St Lukes Crypt
Tel (Information & Support): 020 7351 4480 Tel (Admin): 020 7351 0990 Fax: 020 7349 9809
The LSN is a national charity which provides information and support to people with lymphoedema. It runs a telephone helpline, produces a quarterly newsletter and a wide range of factsheets, and maintains an up-to-date website. It works to raise awareness of lymphoedema and campaigns for better national standards of care.
PO Box 386
Tel (Helpline): 0808 808 5555 (Freephone) Tel (Admin): 01296 619400
Web: www.lymphomas.org.uk Email: firstname.lastname@example.org
Best time to phone: 9am - 5pm, Monday - Friday
The Lymphoma Association (previously known as the Hodgkin's Disease and Lymphoma Association) is a registered charity helping those affected by lymphatic cancer. It offers the following services.
Freephone, confidential telephone helpline giving support and information.
A speedy answer to letters.
Booklets of information on lymphomas, their treatment, and information on coping. The Association has a small collection of videos and cassettes available for loan to members. Contact the Association for a list of what is available.
Phone link to helpers with similar experience of lymphoma.
CAMEO (Come and Meet Each Other), local groups in some areas.
A quarterly newsletter, Lymphoma News, for members.
Leaflets, videos, tapes on many concerns to do with lymphoma.
Macmillan Cancer Relief
89 Albert Embankment
Tel (Helpline): 0808 808 2020 Tel (Text): 0808 808 0121 Tel (Admin): 020 7840 7840
Web: www.macmillan.org.uk Best time to telephone: 9am - 6pm Monday - Friday
Macmillan Cancer Relief is a UK charity supporting people with cancer and their families with specialist information, treatment and care. That support is available from the moment that cancer is diagnosed. They work closely with the NHS and others to develop and pioneer a network of services for people with cancer, working together so that standards of treatment and care can be improved for everyone. Macmillan's aim is to ensure that everyone has access to the best information, treatment and care, which will make people's lives easier and reduce unnecessary levels of fear. All work is funded by donations from the general public. Services include:
Macmillan nurses. There are currently over 2000 Macmillan nurses working in hospitals, the community and hospices. They use their specialist skills to provide emotional support, pain relief, symptom control and information to people with cancer and their families from the moment they first hear they have cancer.
Macmillan doctors. There are over 300 Macmillan specialist consultants and doctors who deliver cancer treatment and care, undertake research and advise and teach other health professionals.
Other health and social care professionals. Macmillan funds offer health and social care professionals across a range of disciplines. Many deliver cancer treatment to patients, such as radiotherapy, dietetics and occupational therapy. Macmillan social workers help patients who may need information about other forms of assistance, such as benefits and patient grants.
Patient grants. Macmillan patient grants help ease financial difficulties that cancer patients may have because of their illness. These can include paying for fuel, convalescence, clothing, bedding, washing machines and travel.
Information and support services. Macmillan aims to ensure that people affected by cancer have access to good quality, comprehensive and appropriate information and support. They have set up 20 cancer information and support centres, which are open to the public. They also produce leaflets on Macmillan services and on cancer.
The information line directs people affected by cancer to services and organisations that can best help each individual. The team of trained staff and volunteers can send callers copies of Macmillan's leaflets and provide information on Macmillan nurses, patient grants and cancer support resources.
Building projects. Macmillan Buildings provide care environments for people at all stages of their illness. They are warm, relaxing and reassuring for people with cancer, and for their families. Over 90 projects have been completed to date.
Macmillan services are available free of charge to anyone affected by cancer, as part of the NHS. Further information about Macmillan is available on request. Applications for patient grants are through community, hospital and hospice nurses, social workers and other health care professionals.
National Cancer Alliance
PO Box 579
Tel: 01865 793566 Fax: 01865 251050 Web: www.nationalcanceralliance.co.uk
The NCA is an alliance of patients and health professionals who are working towards improving the treatment and care of all cancer patients countrywide. The NCA, through its members, are involved in developing and improving cancer services at all levels and undertakes the following range of activities to achieve its aims.
User involvement: representing views, publishing information on experiences, encouraging involvement of users in service planning.
Influencing policy at regional and national levels and participating in Government committees and groups.
Improving and monitoring services: promoting examples of high quality services, developing and monitoring national standards for services, helping the NHS to evaluate and improve local services.
Raising awareness by publications (eg Patient- Centred Cancer Services? - What Patients Say) and running special events.
Teamwork Project: An information resource for cancer patients, includes personal health record, resource book and video.
National Hereditary Breast Cancer Helpline
St Annes Cottage
Tel: 01629 813000 Best time to telephone: any reasonable time
The National Hereditary Breast Cancer Helpline supplies information to women concerned about their risk of breast cancer because of family history. Women can also be put in touch with one another to share experiences and for mutual support. This may lead to the formation of local groups and meetings.
18 Harlesden Road
Tel: 01727 851818 Fax: 01727 851818 Web: www.nsoc.co.uk
Best time to telephone: 9am - 5.30pm, Monday - Friday
The Neuroblastoma Society's purpose is the relief of children suffering from Neuroblastoma, and to acheive this it raises funds for British medical research into improving both the diagnosis and treatment of the disease. The Society also offers an opportunity for parents to give each other mutual help, support and comfort. The Society mainly keeps in touch with its members through a newsletter, which is published 4 times a year. A Parent Booklet has been produced which is given to parents by their treatment centre. There is a small annual membership fee.
New Approaches to Cancer
P O Box 194
Tel: 0800 389 2662 Web: www.anac.org.uk
Best time to telephone: 9.30am - 3.30pm (answerphone at other times).
New Approaches to Cancer aims to promote the benefits of holistic and self-help methods of healing for cancer patients. A referral system and information service operate, directing people with cancer to their nearest sources of help. Holistic therapy is the treatment of a person at all levels of their being - physical, mental, emotional and spiritual. The methods of treatment are those which are considered best by the patient and their doctor through a process of informed consent. Adopting the holistic approach does not mean using alternative therapies alone. Those seeking help from the charity can write sending a large SAE to the address above. The person needing help should give brief details of the cancer, its location within the body and the date that it first became known. It is a help to know life details such as age, family circumstances and possible likely causes (e.g. smoking, bereavements, loss of job etc). In return the charity provides details of the nearest local support groups and advice on useful reading material, based on an extensive library.
Oesophageal Patients Association
22 Vulcan House
Tel: 0121 704 9860 Best time to telephone: 9.00am - 5.00pm, Monday - Friday.
The Oesophageal Patients Association was formed by survivors of oesophageal cancer and members are all patients who have experienced similar difficulties. Objectives of the Association are to help new patients and their families cope with any difficulties arising as a result of treatment, giving support and encouraging them to achieve a good quality of life. This is done by visiting patients in hospital, where possible, before and/or after treatment; establishing contact with them at home during their convalescence; providing information leaflets on matters of concern and arranging meetings of patients. The Association has prepared leaflets on the problems, which are discussed from first hand experience of the fears that can be generated, the pains that can be suffered, and the effects on the digestive system. Titles include: This is your Life - After Oesophagectomy; Swallowing - Nutrition when it's Difficult. There is no membership subscription.
The Orchid Cancer Appeal
St Bartholomew's Hospital
Tel: 020 7601 7808 Fax: 020 796 0432 Web: www.orchid-cancer.org.uk
Best time to telephone: 10am - 4pm, Monday - Friday.
The Orchid Cancer Appeal is dedicated to fund research into men's cancer, their diagnosis, prevention and treatment, and to increase public awareness of these previously neglected diseases. The charity was launched in 1997 to expand the programme of clinical and laboratory research in urological and genital cancers being undertaken by the Men's Cancer Unit at St Bartholomew's and The Royal London Hospitals.
The Orchid Cancer Appeal Aims:
To fund a clinical trials team to support a portfolio of clinical trials in testis and prostate cancer. This includes exploring intermittent hormone therapy in localised prostate cancer and use of chemotherapy for testis conservation in testicular cancer. IN addition, it is supporting research to develop diagnostic tools to simplify the diagnosis of prostate and testicular cancer.
To fund the appointment of Orchid Cancer Nurse Specialists and GP advisors to expand recruitment of patients into clinical trials through Urological cancer networks throughout the country.
To support a combined clinical and laboratory programme aimed to investigate the therapeutic potential of genes involved in making testis cancer so sensitive to chemotherapy in order to develop a new approach to treating treatment-resistant adult cancers such as prostate cancer.
To develop a prostate cancer epidemiology programme linked to a website education programme to investigate and explain what is causing the large difference in prostate cancer deaths in different parts of the world. The aim is to develop new approaches to the prevention of this cancer, in addition funds raised will be used to support a testis cancer epidemiology programme investigation the critical link between declining sperm count and testis cancer that is now known to be a major precursor of this cancer.
To improve men's health by raising their awareness to signs of possible cancer by encouraging regular check-ups by targeting schools and healthcare outlets with information leaflets and posters. Additionally, it aims to develop the charity's website to provide an up to date advisory service to the public on testis and prostate cancer.
Ovacome (ovarian cancer support)
Elizabeth Garrett Anderson
Tel: 020 7380 9589 Web: www.ovacome.org.uk
Best time to telephone: 9.00am - 4.00pm, Monday - Friday.
OVACOME is the only nationwide support group and registered charity for all those concerned with ovarian cancer, involving sufferers, families, friends, carers and health professionals. Ovacome's aims include the following.
To share personal experiences.
To link sufferers via the 'Fone Friends' Network which covers the UK.
To provide information on treatments, screening and research.
To raise awareness of the condition.
Membership is free of charge. Ovacome produces a regular newsletter for members which contains articles on current issues and research, personal experiences, etc. For further details please write to the address given above or telephone.
The Prostate Cancer Charity
3 Angel Walk
Tel (Helpline): 0845 300 8383 (calls charged at local rate) Tel (Main): 020 8222 7622
Fax: 020 8222 7639 Web: www.prostate-cancer.org.uk
Best time to telephone: Main: 9.00am - 5.00pm; Helpline: 10.00am - 4.00pm; Monday - Friday + 7.00pm- 9.00pm Wednesdays.
The Prostate Cancer Charity aims to provide both research into the causes and treatment of prostate cancer and support and information for patients and their families. Services available include the following.
A telephone helpline available for anyone concerned about prostate cancer which is manned by experienced nurses.
Contact with other men and their families who are willing to talk to people about their experiences.
A range of literature is available, sent free of charge to individuals in the UK.
Internet website for up to date information.
Prostate Help Association
Web: www.pha.u-net.com email or postal contact only.
The Prostate Help Association is an information oriented help organisation with a support network, newsletters and information sheets on prostatitis (inflammation of the prostate), benign prostatic growth (hypertrophy) and prostate cancer, including PSA Testing. The PHA began in the autumn of 1993. Since then it has sent information to over 60,000 enquiries; liased/given interviews on radio programmes including BBC Overseas; TV producers and researchers; with newspaper, magazine and freelance journalists. Patients who want information about any prostate condition can send for an initial information sheets and details of the PHA newsletters and support network. Please send two first class stamps to the address given above. The Association's book, Prostate Cancer, covers all the current treatments, side effects and more. There is a 2000 page CD ROM on Prostate Cancer available for £5.00 (correct September 2003). Contact the above address for further details.
Prostate Cancer Support Association
Tel (Helpline): 0845 6010766 (local call rate) Web: www.prostatecancersupport.co.uk
Best time to telephone: any reasonable time
The Prostate Cancer Support Association (PSA) is a national organisation of regional and local self-help and support groups. It is managed by and for men with prostate cancer, their families and others affected by the disease. It provides the following.
Help support and information.
Local and regional groups.
Talks and discussions.
Rare Cancer Alliance
The primary purpose of this organisation is to disseminate information and provide support to all paediatric (childhood) and rare cancer patients. Most of the members are patients or survivors. They are not medical professionals. They are people who have had to go through the process of wading through the information (or lack of information) on the internet for their own rare cancer. There hope is that their organisation and website will save you some precious time and energy.
Their secondary purpose is to offer a consolidated venue to raise awareness and funds for rare cancer research.
The Royal London Hospital
Tel: 0207 377 5578 Fax: 027 377 0740 Web: www.rbsociety.org.uk
Best time to telephone: 9am - 5.00pm, Monday - Friday
Retinoblastoma is a malignant tumour or cancer which develops at the back of the eye. It usually develops before the age of 5 years. The Retinoblastoma Society has the following aims and objectives.
To link families in the same situation.
To provide up-to-date information.
To provide opportunities for parents to share experiences.
To form links with the medical profession, social services, education advisory bodies and others concerned with retinoblastoma.
To publish and distribute newsletters.
The Society is also involved in supporting research and fundraising.
The Roy Castle Lung Cancer Foundation
200 London Road
Tel (Patient Network) 0800 358 7200 Tel (Admin): 0151 794 8800 Fax: 0151 794 8888
Web: www.roycastle.org Best time to telephone: normal office hours
The Roy Castle Lung Cancer Foundation is a charity actively involved in fundraising and supporting patients of lung cancer. The above website includes details of the organisation and its activities as well as patient information on lung cancer, including the following.
How Lungs work.
What is Lung Cancer?
Help & Advice.
A Quit Smoking Section.
The Foundation also has several Patient Groups based around the country. These hold regular meetings for people affected by lung cancer (survivors, patients, family and friends). Visit the website or contact the Network number above for details of your local group.
Teenage Cancer Trust
38 Warren Street
Tel: 020 7387 1000 Fax: 020 7387 6000 Web: www.teencancer.org
Teenage Cancer Trust focuses on the particular needs of UK teenagers and young adults with cancer, leukaemia, Hodgkin’s and related diseases. The Charity designs and builds dedicated adolescent cancer units in hospitals and funds and organises support and information services for patients, their families, schools and health professionals. They can advise primary care practitioners and patients about the location of dedicated adolescent services and names of key contacts.
Teenager Cancer Trust has a number of awareness and fundraising activities throughout the year. The Charity is actively developing overseas contacts in order to create support for teenagers with cancer and related diseases on a global level. An affiliation already exists with CanTeen in Australia and Cancervive in the USA.
Tenovus Cancer Information Centre
Tel (Helpline): 0808 808 1010 Tel (Admin): 029 2019 6100 Fax: 029 2019 6105
Best time to telephone: 9.00am - 4.30pm, Monday - Friday
The Tenovus Cancer Information Centre provides emotional support and information on all aspects of cancer for patients, their families, carers and health professionals alike. Services include the National Freephone Cancer Helpline, staffed by experienced oncology nurse specialists. Telephone counselling sessions are available, as are one-to-one counselling sessions at the centre. Patient Information Booklets are supplied free of charge on a range of cancer issues such as diagnosis and treatments. Tenovus oncology nurse specialists are based at a variety of cancer clinics in University Hospital of Wales, Velindre and Llandough Hospitals in Cardiff; The Royal Glamorgan Hospital; Wrexham Maelor Hospital; and The North Wales Cancer Treatment Centre Ysbytry Gran Clwyd. Please contact the Centre for further developments in this service.
WCT Phoneline For Men With Cancer
11 Westwood Road
Tel: 023 8077 5611 Fax: 023 8067 2266 Web: www.wessexcancer.org
Best time to telephone: normal office hours (answerphone operates)
The WCT Phoneline for Men with Cancer provides a service for men with cancer, their families and carers, and replaces the support previously offered through "MOM" (Mind over Matter) Support Group for men with testicular cancer. The Phoneline provides a free and confidential service in the following ways:
Support - specifically for men and their families offering the opportunity to talk to someone who has been through the diagnosis and subsequent treatment for Testicular Cancer.
Awareness - to increase the awareness of testicular cancer and prostate cancer through a series of themed leaflets entitled "Are you Aware What's Under Your Bonnet?"
Information - to provide verbal and leaflet information (they do not offer medical advice).
Sign posting - They are unable to offer specialist support or information but will endeavour to redirect calls to the most appropriate source of help.
The aims and objectives are:
To listen to what men want when they make contact and tailor the service to their needs.
To continue to represent men's needs, in particular to raise awareness of male related cancers.
To support and form links with existing organisations but not duplicate their service.
To continue to develop an internet resource for men offering 'sign posts' to further information and support with other organisations.
To work with health professionals wherever possible to provide the most efficient and appropriate links between the patient, the health authority and the voluntary sector.
World Cancer Research Fund
19 Harley Street
Tel (Helpline & Office): 020 7343 4200 Fax: 020 7343 4201 Web: www.wcrf-uk.org
Best time to telephone: 9am - 5.30pm, Monday - Friday
World Cancer Research Fund (WCRF UK) is the only major UK registered charity dedicated solely to the prevention of cancer by means of healthy diets and associated lifestyles.
WCRF UK has a world-wide vision and a unique mission. It fulfils its mission by its partnership of education and science programmes, designed to benefit its supporters, health professionals and the general public.
WCRF's UK education and science programmes are funded by donations from the general public. These on-going programmes have been updated in line with the recommendations of the report Food, Nutrition and the Prevention of Cancer: a global perspective, published in 1997.
The vision of World Cancer Research Fund is to prevent cancer in the UK and world-wide and their mission is to raise awareness that the risk of cancer is reduced by healthy food and associated lifestyles.
WCRF UK offers a wide range of booklets, factsheets, health aids, leaflets and newsletters for a nominal charge. A full publications list can be obtained by contacting the above number. Publications include:
Diet and health recommendations for the prevention of cancer.
Maintaining a healthy body weight.
Maintaining physical activity.
Body mass index calculator.
Finding out about cancer.
Reducing your risk of breast cancer.
Reducing your risk of prostate cancer.
Reducing your risk of lung cancer.
Healthy eating away from home.
Newsletter: articles include dietary supplements, additives and residues, salt, alcohol.
Children's newsletter, targeted at 4-7 year olds, articles include: food groups, the human senses, vegetables and fruits, with games and puzzles.