Advocating for metastatic breast cancer patients

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Published: 4 Apr 2012
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Susan Knox - Executive Director, Europa Donna

Susan Knox talks to ecancertv at the European Breast Cancer Conference (EBCC-8), Vienna, March 2012, about lifestyle factors and breast cancer, breast health day campaigns, advocating for metastatic breast cancer patients and the work of Europa Donna with EBCC past, present and future.

8th European Breast Cancer Conference, March 21 - 24, Vienna, Austria

Advocating for metastatic breast cancer patients


Susan Knox – Executive Director, Europa Donna


We have been collaborating with EUSOMA and the EORTC since the founding of the European Breast Cancer Conferences back in 1998 in Florence. It has been an incredible collaboration ever since and is, I think, unique in the world in terms of a conference that involves patient advocates along with researchers, scientists and doctors in developing a programme with the most cutting edge information on research and up to date treatments but with the involvement of patient advocates along the way. So we have a programme that involves patients developing the topics along with doctors and researchers and this provides an important platform also for us after the conferences to act on the important information that comes out here. An example of that is really from the very first conference, the idea that there should be European Parliament resolutions on breast cancer, Europa Donna took the ideas from the conference that had come out, the need for mammography screening for women for early detection, the need for women to be treated in specialist breast units, and brought those topics to the European Parliament and succeeded in 2003 and 2006 in getting parliament resolutions passed that describe the treatment and care that women should receive across Europe. So that’s an example of the kind of thing that comes out of a conference like this which is so important for patients and for women, really, in Europe and across the world.


Another example is our Breast Health Day activity, it’s because of the important information and data that was released by the International Agency for Research on Cancer in 2006 at this conference, that we then developed an educational public information campaign to let young women and girls know how important physical exercise is, and maintaining a normal body weight is, in avoiding a breast cancer diagnosis later in life. So these are some examples of how important this conference is and also important in terms of enabling us to then work on the issues to see that the public, patients and women understand the information and therefore can get access to the kinds of services and treatment they need.


What advocacy issues are being addressed at EBCC?


One of the most important ones this year is advocating for women with metastatic breast cancer. This is a group of women that I think has been under-served, possibly because they have not been as vocal about their needs. This is a group of women who should be treated in specialist breast units but are not being treated necessarily there today. So we’re going to hear, I think, from specialists, as we already have, about the needs these women have for up-to-date treatments but also the need they have to be followed up in a specialist breast unit and to make sure that all of their psycho-social needs are also addressed, which are extremely important for women who have this disease. Also women are living much longer now with this disease and that’s an important thing for the public to understand but, more than anything, to understand that they really have the same needs for outstanding standardised state of the art treatment as do women with primary breast cancer.


You chaired a session on lifestyle and breast cancer?


Yes, I think this is, as I said, an important area that we are working on. We will hear tomorrow about the importance of physical exercise in avoiding breast cancer later in life; we will hear about the importance of maintaining a normal body weight and I think we’ll hear important data about dietary elements that can also help women early in life to change their lifestyle in order to prevent breast cancer later in life. Prevention is an extremely important area now because we know that as much as one-third of all breast cancer could be avoided through proper lifestyle changes. What’s important is educating the public, women and young women, about this and also understanding exactly what those lifestyle changes need to be. So I think we’ll hear some interesting data again from the International Agency for Cancer Research on that topic which we can then take forward afterwards in terms of our Breast Health Day campaigns which we hold every year on 15th October.


Just looking at all lifestyle factors, and there are a lot of studies in a lot of areas but again we as an evidence-based advocacy organisation wait until there is really a preponderance of data and really evidence that significant and agreement on evidence in terms of lots of studies before we would pronounce that a particular thing needs to be done in order to prevent breast cancer. So a lot of work is being done and we hope that there will be some more definitive data tomorrow when we hear this presentation. Then we will move that forward, as I said, through our Breast Health Day campaign which we are also taking on a digital level as well so that we’re on Facebook and Twitter throughout the year, giving people information about healthy lifestyle habits that can help them improve their risk for not getting breast cancer later in life.


What about the field of ‘survivorship’?


Another session which was unique to this conference and a very important area for advocates and for all people working in the field of breast cancer is the area of survivorship. We heard yesterday that there are over 2.5 million women in the United States who are living with breast cancer and, of course, there are many, many in Europe as well. This is an area which we also need to address through specialist breast units in the sense that women need to be followed up, need care and services of a variety of types throughout their lives and there are many, many of these women today and we need to ensure that our healthcare systems are going to be in a position to take care of these women in the future.