A few weeks ago I had the wonderful opportunity to represent BCNA members at the European Society of Oncology Conference on Advanced Breast Cancer in Lisbon.
This conference meets every two years to set international guidelines regarding the treatment of advanced secondary breast cancer, (known in Australia as secondary breast cancer).
There were 1,000 delegates from 71 countries who came together to listen and consider presentations regarding the latest trials and evidence about what is the best clinical approach to treating those whose cancer has spread to other parts of the body. It was very reassuring to see so many people working so well together to reach agreement on the best treatment approaches.
I was invited and supported by the European Society of Oncology to participate in the six member organising committee for the patient advocate program. It was so good to see 68 patient advocates from 49 different organisations in 25 countries around the world participating. Advocates representing the voices of women who have secondary breast cancer was considered a very important part of the guideline development.
The patient advocate sessions were really active. I was very proud to share information about the work BCNA does to support women with secondary breast cancer particularly about our key resource, Hope and Hurdles. There were many common themes from patient advocate organisations about dealing with secondary breast cancer. Themes included; cost of treatment, the management of the side effects of treatment, the importance of good and honest discussion with treating doctors and health professionals and the importance of involving patients and family in treatment decisions. It was interesting that many countries do not have cancer registries and those that do, like Australia there was an agreed need for better data collection on secondary breast cancer.
With patient advocate organisations from around the world there was obviously a great variety of health systems which greatly influences access to treatment and access to new and expensive drugs. For example the patient advocate organisation from the Philippines said one of their problems was that patients are not being cared for by an oncologist, let alone a breast specialist.
In summary a great event with all 1,000 participants at the conference dedicated to improving outcomes for the complex and diverse challenges faces by women with secondary breast cancer.