Resources

This section lists resources which are useful and reliable sources of information for breast cancer patients and their families.

Use of this section does not take the place of going to your doctor with symptoms or taking advice as regards treatment from your specialists. Every woman and her cancer is different and the multidisciplinary approach taken by specialists in specialist breast centres tailors treatment to each woman’s needs. However, good information will help you towards making informed choices in relation to options you may be presented with.

Breast Cancer: General Information

The following sites carry information on Breast Cancer, Diagnosis, Treatments, and other topics.

Action Breast Cancer (Irish Cancer Society)

Action Breast Cancer publishes a leaflet on Breast Cancer and its website carries information on different aspects of breast cancer. The freephone line is manned by trained nurses.

Phone: 1800 200 700
Website: www.cancer.ie/action

Breakthrough Breast Cancer

Breakthrough Breast Cancer (UK) has useful explanations of the biology of breast cancer and information on other aspects of the disease and its treatment

Website: www.breakthrough.org.uk

National Cancer Institute

The National Cancer Institute is a US site with detailed information on breast cancer

www.cancer.gov/cancertopics/types/breast

 Statistics/Epidemiology

National Cancer Registry Ireland

The National Cancer Registry collects statistics on Incidence, Mortality, Treatment and Survival for different cancers and publishes annual reports. The latest report is Cancer in Ireland 1994 - 2005 . The NCRI has also produces joint statistics with Northern Ireland and carries out research, which is published, and can be downloaded from the website.

www.ncri.ie

Risk

Breakthrough Breast Cancer

Breast Cancer Risk Factors: The Facts lists established, possible and doubtful risk factors. This can be downloaded from the Breakthrough website.

www.breakthrough.org.uk

WCRF/AICR 2nd Expert Report:

Food, Nutrition, Physical Activity, and the Prevention of Cancer: a Global Perspective (2007) See at www.aicr.org

Diagnosis and Treatment

The sites listed in the General Information section above all carry information on Diagnosis and Treatment. Other sources are listed below:

Screening

BreastCheck

BreastCheck is the national breast screening programme which currently screens women between the ages of 50 and 64. The BreastCheck website has information on breast screening.

For the BreastCheck Women’s Charter, see www.breastcheck.ie/screening/charter.html

European Commission

The European Commission made a recommendation in 2003 that all member states provide breast screening services for women aged between 50 and 69 (as well as colo-rectal and cervical screening). For progress and information on the situation in member states, see: Cancer screening in the EU: report on the implementation of the Council recommendation on cancer screening (2008) here.

Standards

Diagnosis and treatment carried out according to best practice standards have been shown to result in significantly higher survival rates.

EDI has two publications relevant to standards:

Irish Breast Cancer Charter Sets down 23 principles which specialist breast centres across the country should meet. The Charter is the result of discussion by over 150 women at Europa Donna Ireland's 1st National Conference held in May 2006 and is designed to give women in Ireland standards by which to measure services.

Specialist Breast Centres Explains why it is important for women with breast problems to attend a specialist centre, what they are, the service they provide and where they are.

National Quality Assurance Standards for Symptomatic Breast Disease May 2007 www.hiqa.ie/media/pdfs/Symptomatic_breast_Disease_Standards.pdf
These standards form the basis for the development of Specialist Breast Centres in Ireland and will be used by HIQA to accreditate the centres.

Short Guide to the European Guidelines (EUROPA DONNA, October 2007)
A copy can be downloaded from the ED website www.europadonna.org

The European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis. 4th edition (European Commission, 2006) set European standards for mammography screening, diagnosis and specialist breast units.

Research and Clinical Trials

Controlled clinical trials are the safest way to evaluate new medicines and procedures that may be valuable in predicting and treating breast cancer. It may be of benefit to a woman with breast cancer to be part of a clinical trial that is relevant to her particular diagnosis and circumstances. EUROPA DONNA – The European Breast Cancer Coalition publishes a booklet Breast Cancer and Clinical Trials in order to inform women about clinical trials. This can be read on the ED website ( www.europadonna.org ).

ICORG (Irish Clinical Oncology Research Group) www.icorg.ie

ICORG coordinates cancer research in Ireland and major Irish hospitals are all involved in research which is usually part of international clinical trial programmes. Ongoing research projects/trials are listed on the ICORG website.

Biobank Ireland Trust www.biobankireland.com

Biobanks aid research by maintaining ‘banks’ of tumour tissue to be used in research and nowadays you may be asked to give permission for use of your tissue before you have an operation. Biobank Ireland is an Irish biobanking project and the site explains the project.

Younger Women

The sites listed in the General Information section above have relevant information. Also see:

Action Breast Cancer Information for younger women at www.cancer.ie/action/younger.php

There are some organisations which deal specifically with younger women and breast cancer:

Young Survival Coalition www.youngsurvival.org/

Rethink Breast Cancer www.rethinkbreastcancer.com

Breast Cancer and Fertility, published by EDI in 2007, covers the topic in an Irish context. It has been prepared by health care professionals with specialist knowledge in the area of breast cancer and fertility.

Fertile Hope www.fertilehope.org

 

Genetic/Familial Breast Cancer


The National Medical Genetics Centre, Crumlin, has information on hereditary breast cancer to download at www.genetics.ie/clinical

Action Breast Cancer www.cancer.ie/action/hereditary_breast_cancer.php