As October draws to a close, and another awareness month for the breast cancer movement, there is some good news for those living with or supporting those with advanced or metastatic breast cancer. This year there has been more emphasis on advanced disease amid the sea of pink ribbons and fundraising campaigns, which have tended to focus on early and curative stages of breast cancer, leaving many women (and some men) isolated from both the advocacy and medical communities.
This is particularly so in the US, where the pink ribbon campaigns were first launched. For four years, there has been a national metastatic breast cancer awareness day (13 October this year), and it has now attracted attention. Several national media outlets have highlighted the issues facing those with advanced disease, such as the Chicago Tribune and SFGate and there was an item on the TV programme, Good Morning America. Australia’s Breast Cancer Network joined in this year for the first time, but under the name of secondary breast cancer awareness.
Women speak out
Advocacy groups such as the Metastatic Breast
Cancer Network and METAvivor have been instrumental in the US in raising the profile of
advanced disease, and women with metastatic disease are taking to blogs to write about their experiences and how they feel about the lack of interest from the wider community – for example here and here. They are not only powerful testimonies but also calls to action for progress for their incurable condition, not least just being heard.
Again in the US, industry and advocates have come together in the Metastatic Breast Cancer Alliance to report on the status of research on advanced breast cancer, the quality of life of patients, what information and support is available, and public awareness. Not least, they aim to find out much more about how many people have metastatic disease. Their report (left) just published with the support of the Avon Foundation, is probably the most comprehensive review so far of these issues – and the agenda for the work needed is challenging, to say the least.
New survey data in the US has also informed Pfizer’s Breast cancer: a story half told initiative – as the company says: “Many people know little to nothing about metastatic breast cancer.” It joins a similar initiative sponsored by Novartis, Here & Now, which launched in Europe last year.
The advocacy movement in the US is particularly vocal, but if it has struggled to be heard, imagine how difficult things are in many other countries. There is an urgent need for much more to be done globally across the spectrum of issues – standards of care, research, and support for those with metastatic and locally advanced breast cancer.
ABC guidelines out
The latest updated international guidelines (right) that cover this spectrum from ABC, the Advanced Breast Cancer conference, aim to help fill the gaps by applying current knowledge to patient care. The conference, held by the European School of Oncology (ESO) and the European Society for Medical Oncology (ESMO), is the only global event that brings together health professionals, researchers and advocates to publish such guidelines, which have recently been published in The Breast and Annals of Oncology – the full paper is free to download via the ABC site.
Progress in treating advanced breast cancer remains frustratingly slow, and awareness, support, and research funding are still low. The ethos of the ABC conference is to build on the momentum from the latest initiatives and especially to unite experience and research at a global level, and we encourage all to download the guidelines and help spread the word.