Recently (3-5 November) at a conference in Lisbon, Portugal, experts from around the world agreed on the world’s first consensus how to treat and help individuals suffering with advanced breast cancer.

The Advanced Breast Cancer (ABC1) conference was the first of a regular, two-yearly meeting where experts from around the globe will agree and promote evidence-based guidelines on how to best approach the cancer journey individuals with metastatic (stage 4) disease, which is accountable for the majority of deaths from breast cancer.

Both women and men whose early stage disease recurs at the metastatic stage or those diagnosed with advanced breast cancer, have had to deal with insufficient procedures to treat their disease as well as often a lack of support for this (apart from a few cases) deadly, incurable progressive condition.

Several individuals feel isolated due to being told their future is limited by some patient groups and health professional, who primarily focus on curable early stage cancers.

According to the belief of oncologists, any treatment method can be applied for this patient group as advanced breast cancer is an incurable disease and there are only limited treatments with high-levels of evidence. They also believe that less than optimal treatment arises from insufficient patients enrolled in clinical trials that would produce this urgent high-level evidence.

Fatima Cardoso, ABC1 coodinator and director of the breast cancer unit at the Champalimaud Cancer Center in Lisbon, explained: “We have to apple the same high quality principles we use in the early stage setting. That means all women and men with advanced disease should be seen by a multidisciplinary team in a specialized breast unit, and we should treat each subtype of breast cancer differently and according to evidence, and enter more people in trials. At present, even in major cancer centers, individuals physicians often take care of those with advanced cancer, outside of a multidisciplinary team.

This situation has to change. We know from early stage breast cancer that survival has improved through the use of international consensus guidelines – and we must do the same for metastatic disease as, despite some progress, median survival is still only 2-3 years across all subtypes.

As part of that multidisciplinary approach, patients need to receive appropriate psychosocial support, and high-quality supportive and palliative care for symptom control, including pain. Even in some developed countries, patients do not have easy access to adequate pain control, in particular with morphine. Pain control in palliative care is also a priority for the World Health Organization.”

81% of respondents from a survey of attendees conducted prior to ABC1, concurred that advanced breast cancer treatment is not as high profile compared to treatment for early stage disease. In addition they blamed insufficient clear guidelines for treatment and management as one of the primary reasons for this situation. Furthermore, at least have of respondents reported that the ABC1 guidelines would be put into action, and would help obtain resources.

Eric Winer, ABC1 coordinator and head of breast oncology at the Dana-Farber Cancer Institute in Boston, United States, explained: “Survival of people with advanced breast cancer is increasing, but progress is painfully slow. Despite many other meetings about breast cancer, management of metastatic disease has suffered from a lack of strong international collaboration in clinical and translational research that could lead to faster advances and evidence-based care standards. As a result, patients and carers often feel lost in a maze of many different opinions and scattered guideline efforts.”

Musa Mayer, an advocate based in the United States, who runs to support patients with metastatic disease, said: “Breast cancer takes a terrible toll – more than half a million die around the world every year. The needs for people with advanced cancer are profoundly different from those with primary stage cancer. Women living with metastatic cancer have been largely invisible and ignored, especially in October when in America we are awash with “pink ribbon” messages about early detection and survivorship.

We know that women with advanced diseases receive far less attention in many other countries too than those with primary cancers, and most do not have access to information about support that meets their needs. If the confusion patients face in making treatment decisions can be reduced, and meaningful guidelines can be crafted that account for individual differences and respect patient preferences, it will help women and men with metastatic breast cancer manage the anxiety and loss of confidence they feel when a treatment fails. This will also help meet the ambitious goal of ABC1 of improving survival through better use of available knowledge and therapies.

ABC1 is a crucial first step and patients and advocates are watching and grateful that our time has finally come.”

Over 800 scientists, clinicians, advocates and patients from across the world attended the ABC1 conference, and built up to a consensus panel session at which professionals voted on guidelines that will be presented, after editing and final agreement, in a special report in The Breast in the beginning of 2012, and will also be presented throughout the year at major oncology conferences.

The ABC1 conference was attended by more than 800 clinicians, scientists, advocates and patients from all continents, and built up to a consensus panel session at which experts voted on guidelines that will be presented, after editing and final agreement, in a special paper in The Breast in early 2012, and which will also be presented at major oncology conferences throughout the year.

The other two coordinators of the conference were Larry Norton, head of solid tumor oncology, Memorial Sloan-Kettering Cancer Center, New York, United States, and Alberto Costa, director of the European School of Oncology, Milan, Italy.

The first consensus guidelines will include:

  • Balanced decisions regarding cost.
  • The need for routine psychosocial support, multidisciplinary care and patient involvement in decision-making.
  • Clear communication regarding incurable but treatable nature of metastatic disease.
  • A comprehensive list of factors to take into consideration for treatment choice, and a matrix of approaches to apply according to the biological nature of the cancer (hormone receptor positive/negative, HER-2 positive/negative, etc.).
  • Chemotherapy and targeted therapy options.
  • Optimal treatment of bone and brain metastases.
  • Enrolling patients in clinical trials as a priority.
  • Palliative care provision, including optimal pain control.

Written by: Grace Rattue