Foreword

 

Please find below a press release from the European School of Oncology (ESO).
For more details contact Chatrina Melcher, cmelcher@eso.net (tel: +41 91 820 0956)

PRESS RELEASE
26 November 2013

Momentum builds for treatment and care of women and men with advanced breast cancer at ABC2
(Second International Advanced Breast Cancer Consensus Conference)

Patient experience and advocacy take centre stage
Guidelines now include locally advanced inoperable breast cancer
Reinforcement of multidisciplinary care, including specialised nursing

[LISBON] The world’s only international consensus conference on how – and why – to treat and care for women and men with advanced breast cancer met for the second time in Lisbon, Portugal, on 7–9
November 2013, at ABC2.

More than 1,000 healthcare professionals – oncologists, surgeons, nurses and more, plus many patient advocates – from more than 70 countries heard about the state of the art in treatment and care, before an
expert panel updated the international guidelines first developed at ABC1 two years ago.

But they also heard and discussed passionate calls for countries to embrace a holistic standard of care to address the all too common isolation and missed opportunities for treatment and support that many
women and a few men with metastatic disease continue to suffer from.

At ABC2, patient advocates – many with advanced breast cancer from some 50 patient organisations in the US, Europe, Australia, the Middle East, and Asia – established the ABC Patient Advocacy Committee. They will publish a position paper about the challenges faced by ABC patients and advocates worldwide and suggestions to overcome them, in tandem with the ABC guidelines.

In a keynote speech to the conference, Doris Fenech, an advanced breast cancer patient, nurse and advocate based in Malta, described in detail how the physical and emotional needs of women with metastatic disease are different from those with early cancer. “For most healthcare professionals a diagnosis of metastatic breast cancer is the beginning of the end and frequently they are at a loss at what to say to us and how to help,” she said. “These attitudes have contributed to misconceptions and marginalisation by the public, the media and healthcare professionals themselves.”

She added that the right supportive care with access to other branches of health, and better communications and information can lead to a more positive outlook and longer time at work, as in her case. Doctors and health authorities are also often reluctant to treat metastatic patients for minor benefits. “But a few months can make a big difference – it means I could see my daughter graduate or see my grandchild. But we are rarely invited on drug trials – we need the same opportunities as those with primary disease. Treatment is our lifeline.”

“What makes ABC a very special conference is that we are all together – people touched by the disease and people who dedicate their lives to dealing with it,” Larry Norton, ABC2 co-chair and deputy physician-in-chief for breast cancer programmes at Memorial Sloan-Kettering Cancer Center, United States, told the audience. “The spirit of working together towards a common purpose and not separating physicians from patients is what makes this a special meeting and why it is successful and will make a difference.”

“We are still not making great progress in treating advanced breast cancer – survival rates have not improved significantly and there is so much more work to do,” says Fatima Cardoso, ABC2 co-chair and
director of the breast unit at the Champalimaud Cancer Center in Lisbon.

“But at ABC1, for the first time we addressed the twin obstacles of a lack of protocols to treat the disease, and often poor support for what in all but a few cases is an incurable and progressive condition. We are determined to apply the same high quality, multidisciplinary principles we use in the early stage setting and I am pleased to report that ABC guidelines have so far been presented in many countries, and indeed implemented in some, and have become endorsed and supported by major oncology societies. A major step forward is that the ABC guidelines are now being developed jointly by the European School of Oncology (ESO) and the European Society of Medical Oncology (ESMO).

“And there has been a boost in awareness raising, with all major international advocacy groups dedicating more time and resources to these patients and with new global campaigns such as the global ‘Count Us, Know Us Join Us’ survey, and the ‘Here & Now’ pan-European advanced breast cancer patient and carer survey.

“There is no doubt that the ABC guidelines have been widely welcomed and are starting to make a difference.”

The first scientific sessions at ABC2 focused on the main advances in treating types of advanced breast cancer, and recommendations were updated for new treatments for HER2+ and ER+ disease, and how they should be integrated into the clinical setting. But there was little to report for the particularly difficult triple negative disease.

“At ABC2 we also introduced recommendations for patients with locally advanced inoperable breast cancer,” says co-chair Eric Winer, head of breast oncology at Dana-Farber Cancer Institute, US. “This Group lies between early and metastatic breast cancer – the disease is very advanced in the breast and in the regional lymph nodes, but there are not yet distant metastases. The main recommendations are that all
these patients must be discussed in a multidisciplinary team before any treatment; chemotherapy should be the first treatment, not surgery; most patients become operable with either mastectomy or, in selected cases, breast conserving surgery; and all patients need radiotherapy.”

Other recommendations made at ABC2 include treatments for various metastatic tumour sites such as liver, pleura, skin and brain, adding to brain and bone recommendations already made at ABC1. Also added
were recommendations on metastatic breast cancer in men, and disease related to BRCA mutations.

“In keeping with the conference’s strong multidisciplinary ethos, we are also making a recommendation for an urgent need for specialist breast oncology nurses, or at least doctor’s assistants,” says Alberto Costa, ABC2 co-chair and scientific director of the European School of Oncology. “The advocates also helped to reinforce the absolute importance of providing accurate and personal information for a patient about their disease and treatment, which must be provided by a multidisciplinary, specialised team, and also making available supportive and palliative care from the very beginning of their hard journey.”

Conference sessions on optimal pain control, psychological support, patient perspectives on symptoms, and global disparities in access to supportive and palliative care added detail on these vital multidisciplinary topics.

In the lively advocacy workshops, many advocacy organisations came together, some representing certain groups such as young women with metastatic cancer, and those with inflammatory disease.

The consensus panel was 40 strong and comprised international experts from 20 countries, including the current president and two former presidents of the American Society of Clinical Oncology, the current
president of the European Society of Medical Oncology, patient advocates, specialised nurses, psychooncologists and world experts in supportive and palliative care.

Notes to editors:

ABC2, the second international Advanced Breast Cancer consensus conference, was held at the Lisbon Congress Centre, Portugal, on 7–9 November 2013. It was organised by the European School of Oncology, a non-profit organisation based in Milan, Italy.

ABC2 attracted more than 1,000 delegates from 71 countries, building on the attendance of about 800 at ABC1.

The programme and abstracts are published in The Breast 22 Supp 3, 2013.

The ABC consensus conference takes place every two years. The first conference, ABC1, established the world’s first global guidelines for women and men with advanced breast cancer (see The Breast 21, 242–
252, 2012). These were updated at ABC2 and will continue to be developed at ABC3, which will take place in Lisbon on 5-7 November 2015.

The updated guidelines will be published in The Breast in early 2014. The guidelines are developed in cooperation with the European Society of Medical Oncology (ESMO) and will be endorsed by the European Society of Mastology (EUSOMA), the Latin American Federation of Mastology (FLAM) and the International Society of Senology (SIS).

In addition, the patient advocates at ABC2 will publish a position paper in early 2014.

The consensus meeting stems from the establishment by the European School of Oncology in 2004 of the Advanced Breast Cancer Task Force to develop international guidelines for managing the disease. The
meeting brings together world-leading oncologists, health professionals from all disciplines who work with breast cancer patients, and patient advocates, many of whom have metastatic breast cancer. The coordinators of the taskforce are Fatima Cardoso and Eric Winer.

For more information about the ABC guidelines and development process, or to arrange interviews with the conference co-chairs:

Fatima Cardoso, Portugal
Alberto Costa, Italy
Larry Norton, United States
Eric Winer, United States

please contact Chatrina Melcher: cmelcher@eso.net (tel: +41 91 820 0956).

The European School of Oncology (ESO) was founded in 1982 with a mission to reduce unnecessary Death and suffering from cancer by promoting earlier diagnosis, optimal medical treatment and holistic patient care. ESO’s educational events are clinically orientated, multi-professional and evidence based as well as reflecting the human experience of cancer. In recent years ESO has increasingly addressed the wider political, administrative and organisational issues that affect the ability of health professionals to deliver top-quality patient-centred care. For more details see www.eso.net


Facts about advanced breast cancer:

One in eight women will develop breast cancer; those who die from the disease usually do so from distant metastases. In developed countries, even with the best available treatments, about 30% of people who
have had breast cancer suffer a recurrence of the disease. The World Health Organization is forecasting a large increase in cases in developing countries, with 50% of the deaths occurring in these countries within a few decades.

In the European Union, one woman is diagnosed with breast cancer every 2.5 minutes and one woman dies from the disease every 6.5 minutes. Globally, about half a million people die from breast cancer every year.

The true prevalence of metastatic breast cancer has not been accurately captured – neither in the United States nor in most European countries – as cancer registries do not record distant recurrences. This hinders service development.

Advances in treating early breast cancer are measured in many years’ survival; in metastatic breast cancer advances are still measured in days or a few months and the median survival, taking all subtypes together, is only two years. However, due to the development of targeted efficacious treatments such as anti-HER-2 agents, some patients with certain subtypes of breast cancer can now live with advanced disease for eight or more years. A certain risk of recurrence remains in all breast cancer survivors during their lifetime.

For more information about breast cancer advocacy and support for women with advanced breast cancer, contact members of the ABC Patient Advocacy Committee:

METAvivor Research and Support, Annapolis, US. www.metavivor.org
Europa Donna – the European Breast Cancer Coalition, Milan, Italy. www.europadonna.org
AdvancedBC.org, New York, US. www.advancedbc.org
Metastatic Breast Cancer Network, Inverness, US. www.mbcn.org
Breast Cancer Network Australia, Camberwell, Victoria, Australia. www.bcna.org.au
Komen Foundation, Dallas, US. ww5.komen.org
 

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Please, click HERE for a PDF version of the press release.

The ABC2 post-conference press release is available also in Portuguese. Please click HERE.