Introduction
A woman diagnosed with breast cancer (BC) is receiving good and professional treatment in Denmark. Every health care professional is doing their best to give as much information as possible. Family and friends try to give help and to be understanding and caring. Shared decision making is regarded an important issue, to ensure that the women feel acknowledged and understood. But even though we receive a lot of oral information and printed information materials, it feels like being sucked into a vacuum, where everything is decided from the ‘cancer point of view’ – an expression often heard when talking to BC survivors. Survival is the first and foremost purpose.
After completing the treatment and an endless number of visits to the hospital, the BC patient is expected to return to being the same person as before treatment. Often with a box of medicine to be taken daily for the next 5–10 years. This is where the realization process takes its beginning and where we, as a patient organization, has our primary purpose. This is where patient advocacy begins, this is where our members contact us, this is where they join in and begin the journey of learning to live with the fact that cancer hit me this time – and not my neighbor. The current paper addresses the work we do in DBO, the Danish Breast Cancer Organization (www.brystkraeft.dk), and the importance of participating in different national and international fora.
The journey into patient advocacy in Denmark normally takes its beginning with a breast cancer diagnosis and treatment. According to DBCG’s annual report more than 46,000 Danish women were diagnosed with BC in 2014, and sadly 1115 women died from BC. The same year my own journey into the BC world took its beginning. Many of us, treated for BC, are living with the results of surgery and side effects of systemic treatments and radiotherapy. We feel the need to understand what has happened, why we never will be the same person again and how to cope with the risk of relapse. Hence, we look for information and participate in meetings and discussions with other BC survivors to get knowledge and learn to understand. As a consequence, some of us became volunteers. Often, in The Danish Cancer Society or as a member of our organization for BC women, Danish Breast Cancer Organization (DBO).
The Danish Breast Cancer Organization (DBO)
DBO was established in January 1999 as a nonprofit organization founded and run by volunteers. Presently DBO has 2500 members, all being breast cancer patients, organized in eight groups working all around Denmark. DBO is supported by The Danish Cancer Society. The members pay a moderate annual fee. In addition, DBO applies for financial support from a broad range of foundations.
The main goals of DBO are
To increase the knowledge of breast cancer through information and education to our members
To work towards a uniform and optimal BC treatment in Denmark
To support local activities in the groups
To give guidance and support to BC patients
Organization and activities
DBO organizes a general assembly and an annual member meeting. At the meeting, a variety of presentations are given, mainly regarding BC treatment and survivorship management. Especially the interest in the latter has increased, partly due to more survivors with long term adverse events from treatment.
The DBO groups are spread all over Denmark. In each group, there are normally 3–7 active members, who take responsibility to arrange local meetings and other events. These members meet once a year with the board to discuss past events, information and news, and share ideas for the upcoming period. The groups are the ones talking to members and they know what the important issues are.
Our main and most important work is to share information and support. This happens through seminars and meetings all over the country. Mostly organized by the local groups alone or in cooperation with the board.
Another important task for the board is the contact to health care professionals, journalists, politicians, etc. We attend meetings, seminars, and conferences, both in Denmark and in Europe. In this way, we meet with professionals as well as other BC organizations, and are kept up to date regarding new treatments and other relevant issues for our members.
DBO has an active homepage and distribute a magazine to our members 3–4 times a year. It is delivered to many hospitals as well. The board members take care of the daily work in the organization, from registering new members, taking telephone calls, e-mail correspondence, bookkeeping, planning of seminars, and events, to keeping contact to the groups and participating in relevant meetings in Denmark and abroad. This work is time consuming, but also very giving and inspiring.
Seminars and events planned by board members, alone or together with the groups include: seminars for the groups; the annual meeting; seminars for women with metastatic BC; seminars for young women with breast cancer; and seminar for women with side effects from treatment. The typical themes for the seminars range from new cancer treatments, physiotherapy methods, lymphoedema care, and treatment, to presentations from BC survivors on how to cope or other survivorship issues. The seminars are well attended, and we have waiting lists every time. The women appreciate the information they get, and enjoy being with other with BC diagnosis. The women enjoy being with other BC survivors and feel the information they get, both regarding treatment and survivorship are important for their wellbeing and help them to cope with their situation.
The local groups organize approximately each eight arrangements yearly amounting to a total of approximately 60–65 arrangements a year. This include informative meetings, evenings where they meet and talk, dance events, walks in nature, Pink Saturday arrangements, information about breast reconstruction or lymphoedema, training events, and many more.
BC survivors often feel the need to talking to others and to exchange knowledge around survivorship in every aspect of the word. Personally, DBO provided me with the main tools for understanding and knowledge of my own situation. Especially, the area of side effects is on a short and long term an issue amongst us and something we discuss at almost every meeting.
To deal with some of these issues in practical terms, the volunteers also produce and distribute ‘heart pillows’ (heart formed pillows to protect the axilla after surgery). The heart pillow is for instance supportive when traveling, knitting, sleeping, or just when we need to rest.
National and international collaboration
At the national level, the collaboration with The Danish Cancer Society and Danish Breast Cancer Cooperative Group (DBCG) is very important. It supplies us with relevant information, help, and support. As an example of collaboration with the health authorities, DBO participated as patient representatives in the review of the National Cancer Plan IV and is currently involved in work to prevent bad practice in the screening programs.
Internationally DBO participates in the Nordic coalition of BC organizations which every 2 years organize a Nordic conference. In 2016, DBO joined the Europe Donna network as the Danish representative. Europe Donna is a European network with national groups in 47 countries and is our door to collaborate on an international level. We work together to increase the awareness of BC, including better treatment, early detection, acknowledgement of good practice in the health care system, and many other issues. We get advocacy training in Milan on such topics as BC screening, diagnosis, surgery, adjuvant therapy, as well as advocacy training to learn to talk to politicians, media, health care professionals and so forth.
In summary, the advocacy work by DBO is important to our members. We collect and spread information, who help BC survivors to get a better knowledge of different aspects of diagnosis, treatment and follow-up of breast cancer.
Our members are often told ‘you are cured’ and ‘your risk of relapse is very low’. They hear the words – but the understanding takes time. Due to the fact, that many of our members must go to screening or must visit the hospital for follow-up, they meet the cancer fear repeatedly for the rest of their life. That is where advocacy matters. They find comfort in the talk over a cup of coffee, listening to the story of others, talk about side effects of the ‘little pill that keeps me safe’ and how to cope for 5–10 years with it. Our seminars are important as well. Both the ones held for our members and the board participate in. We enjoy every presentation given by health care professionals. It is giving us and our members so much knowledge and understanding.
Although my journey into the breast cancer world closed some doors, it also opened many new ones. Especially, the advocacy work has grown into being one of the most important things I do. Even though I must live with side effects for the rest of my life I can say the very important sentence. ‘I am alive, I am scarred but I am not scared’ and as many of our members I can thank the health care professionals that helped saving us.
Disclosure statement
No potential conflict of interest was reported by the author.