Become an Effective Breast Cancer Patient Advocate

European Breast Cancer Advocacy Training Course

Each year EUROPA DONNA - The European Breast Cancer Coalition offers its Breast Cancer Advocacy Training Course in Milan, Italy. This training course is now in its 17th year. It usually takes place over three days in November and is open to two advocates from each of EUROPA DONNA's 47 member countries. The participants are nominated by their respective organising committees. Bursaries and travel grants are typically available.

The purpose of the course is to ensure that advocates are aware of the latest available treatments and diagnostic practice for breast cancer and are equipped with the necessary communication skills, lobbying techniques and media training.

To gain a flavour of the course content and its value to new advocates, take a look at this report from the nominated Irish delegates for 2013, Anne Keating and Maria Gonzalez:

"This year there were 57 delegates from 32 countries. We all travelled to Milan on 15 November 2013 to undertake our training together. On Friday afternoon the course was introduced by Elizabeth Bergsten Nordstrom, President of EUROPA DONNA. There then followed an overview of EUROPA DONNA - The Breast Cancer Coalition, given by Susan Knox, Executive Director, Karen Benn, Head of Policy/Public Affairs and Barbara Klein, Communications Officer.

"There are two modules on the course: the Scientific Module which takes place on the Friday afternoon and all day Saturday and the Communications Module which takes place all day Sunday. On Friday and Saturday presentations were made by medical professionals who are experts in their field. On Sunday Alison Dawkins and her team from 360 Flexible Training Solutions put us though our paces on effective communication skills. While it is a very intense course it is a very valuable experience and is of great help to anybody considering becoming a breast cancer patient advocate.

"There were many interesting presentations. On Friday afternoon Carlotta Galeone, PhD. Unit of Epidemiologic Methods, Mario Negri Institue, Milan made a presentation on Epidemiology, Prevention & Risk Factors. This was followed by a very interesting presentation on Basic Biology of Breast Cancer and Genetics given by Bettina Borisch, MPH Institute of Social and Preventative Medicine, University of Geneva. On Saturday morning there were presentations on Clinical Trials, Diagnosis and Early Detection of Breast Cancer, and Treatment of Breast Cancer: Surgery and Treatment Options.

"The presentation on Treatment of Breast Cancer: Surgery and Treatment Options by Dr Alberto Costa MD was very interesting. He explained how the breast develops and matures. He then gave us background information on the most common types of breast cancer, ductal and lobular carcinoma, and the need for a new classification of these breast cancers. He then went on to talk about difficulties in detection and diagnosis. How a breast cancer can be palpable (a lump) or non-palpable (no lump), very early stage e.g. microcalcifications which are being detected as a result of improved screening.

"He spoke about the risk factors and used the Gail Model to demonstrate these: menarch (age of first period), age of first pregnancy, number of pregnancies, lactation, family members with breast cancer, precancerous lesions (biopsies). He also spoke about breast cancer conservative and oncoplastic surgery and procedures available to breast cancer patients. His most important message was to always attend screening as changes in the breast can be compared to previous mammograms and this enables early detection. Dr Costa is a director of the European School of Oncology, coordinator of the Breast Surgery Unit at the Maugeri Foundation in Pavia, Italy and also coordinator of the Canton Ticino Breast Unit, Lugano, Switzerland.

"In the afternoon there were presentations on European Guidelines for Specialist Breast Units given by Susan Knox, Executive Director, EUROPA DONNA, and Mammography Screening Guidelines and Screening Figures in Europe by Chris de Wolf, MD, medical director of the breast cancer screening program, Berne, Switzerland. Psycho-social Services for Breast Cancer: What should we lobby for? by Stella Kyriakides, Psychologist, was a most interesting presentation. Stella gave a very charismatic presentation on psycho-social problems encountered when there is a breast cancer diagnosis. Loneliness, loss of control, threat to self-esteem and survival issues: changes in life priorities, coping with residual disease, treatment side effects, concern over recurrence, work and financial issues. She also spoke about how we should use our personal experiences to lobby for better services in our respective countries. Stella Kyriakides is a psychologist who is also a past president of EUROPA DONNA and a member of parliament in Cyprus. She is also a strong breast cancer activist, has made presentations on breast cancer worldwide and is the advocacy editor of the magazine The Breast.

"After a much needed coffee break Susan Knox presented on Advocacy and Lobbying: Definitions and methods. This was followed by workshops on lobbying strategies and success with Q&A from participants and discussion on implementing the European Parliament Breast Cancer Resolution. I particularly enjoyed the workshop as it afforded us time to mix with other participants and compare notes on services available in other countries.

"Sunday was dedicated to developing our communication and presentation skills. There were presentations and workshops on communication skills, assertiveness techniques and handling the media, followed by presentations by course participants. All participants were presented with a certificate of completion by Karen Benn who then closed the course.

"A very valued aspect of the training is the opportunity to meet advocates from other countries. Maria and I have forged new friendships with other participants on the 2013 European Breast Cancer Advocacy Training Course. This will be of great benefit to us in our advocacy work in the future."

Anne Keating

December 2013