Become a More Effective Breast Cancer Advocate

Following the pilot programme launched in 2001 Europa Donna (The European Breast Cancer Coalition) offers an annual European Breast Cancer Advocacy Training Course in Palazzo delle Stelline, Milan, Italy.  The course takes 2.5 days and is open to 2 participants from each of Europa Donna’s 42 member countries, who are nominated by their ED National Representative.

In November 2008 Europa Donna Ireland nominated Trudy Doyle and Mary O’Brien to attend the Advocacy Training Course.

The course covered various areas of importance to breast cancer advocates including diagnosis and treatment of breast cancer, to learning effective communication and public speaking skills, lobbying techniques and media training.

The opening module this year was given by Alberto Costa, MD, Director of European School of Oncology, Milan and Head of Breast Unit, Maugeri Foundation, Pavia, Canton Ticino, Switzerland.  He addressed basic biology of breast cancer and genetics. 

Dr Eva Negri, Sc. D. Head of the Unit of Epidemiologic Methods, Istituto di Ricerche Farmacologiche “Mario Negri”, Milan, spoke on Epidemiology, Prevention and Risk Factors.

The International Agency of Research on Cancer (IARC) has estimated that in the year 2000 over one million women have developed breast cancer worldwide, 340,000 of which in Europe.  Breast cancer is more frequent in more developed areas of the world than in less developed areas.  Within Europe, Western and Northern countries tend to have higher rates than Southern and Eastern countries.  Women with a family history of breast cancer in first degree relatives have a tow-fold risk of developing the disease than women with no affected first degree relatives, and the risk is higher at younger age or if more than one relative is affected.

However, although genetic factors play an important role, also environmental factors can substantially modify a woman’s risk of developing breast cancer.  Hormones, particularly sex hormones, play an important role in the development of breast cancer.  Thus, factors that influence sex hormone levels affect breast cancer risk.  An early menarche and a late menopause increase the risk, while having children early; having many children and breastfeeding for long periods decreases the risk.  Oral contraceptives and hormone replacement therapies increase breast cancer risk, but the negative effect diminishes or disappears after discontinuing their use.

Other lifestyle factors also can affect breast cancer risk.  Overweight and obese women are at high risk of breast cancer after the menopause, but no increase in risk is observed for overweight women before the menopause.  A high energy intake, alcohol intake and a diet rich in saturated fat may increase breast cancer risk, while high vegetable intake and physical activity may reduce it.

Dr Olivia Pagani, Institute of Oncology of Southern Switzerland, is co-president of the breast cancer project group of the Swiss Institute of Applied Cancer Research (SAKK), spoke on clinical trials confirming that they should address women’s well being and safety.

Dr Marco Rosselli Del Turco, President of European Society of Breast Cancer Specialists (EUSOMA), emphasised that early detection, obtained by means of population based mammography screening, but also by promoting self awareness and providing high quality diagnostic service, significantly reduced breast cancer mortality. 

The second day was a communication skills programme designed to equip the participants with strong advocacy skills.  Such skills included the ability to present in public, the ability to make your case assertive, building constructive relationships with the media and engaging in effective political lobbying.

Susan Knox, Executive Director of Europa Donna, closed the Training Course by emphasising the importance of Europa Donna’s role of lobbying parliament meetings, exhibitions, publications and media.  The Coalition works to raise awareness of breast cancer and to mobilise the support of European women in pressing for improved breast cancer education, appropriate screening, optimal treatment and increased funding for research.  EUROPA DONNA represents the interests of European women regarding breast cancer to local and national authorities as well as to institutions of the European Union. She also advised us that a  booklet on “A Short Guide to the European Guidelines for quality assurance in breast cancer screening and diagnosis can be obtained through the European Commission bookshop at http://bookshop.eu.int - this booklet outlines the standards for countries to follow.

The Training Course was closed by Karen Benn, training and project manager, who presented us with our certificates.  All in all the weekend was intensive but gave all the 46 participants from 23 countries an opportunity to view the bigger picture of the work of an advocate.  Everyone seemed to enjoy the experience and there were many laughs and story swapping when we did take time out for a cup of tea and an enjoyable meal in the evening.