Tag Archives: breast cancer

ABC steps up to fill the gaps in metastatic breast cancer care

Marc Beishon

Marc Beishon

 

The third Advanced Breast Cancer consensus conference – ABC3 – took place last month at its regular Lisbon home. ABC is the world’s only international consensus meeting devoted to the care and treatment of women and men with locally advanced and metastatic breast cancer. At each ABC conference, a large panel of experts adds and refines guideline statements for managing patients, with the aim of promoting them around the world for all countries, including those that lack the resources of developed nations.

ABC has contributed greatly to a fundamental change in thinking about metastatic disease. No longer do oncologists raise doubts about the feasibility of guidelines for treating such patients – the argument that there are too many variables among individuals is not often heard now.

And the conference has done much to unite the various parties in the advanced breast cancer community – in particular, patients and advocates participate on an equal basis with physicians (including on the consensus panel) and there is also a wide spectrum of professional expertise, again on the panel and in the conference sessions. Psycho-oncology, supportive and palliative care, health economics and survivorship all had prominent positions alongside scientific progress, and a complementary stream for advocates also allowed networking among patient representatives from many countries.

It’s not easy to break down barriers, particularly between doctors and patients, and ABC co-chair, Fatima Cardoso, reminded delegates that the conference has a mission for all to be respectful of the views of others. She also introduced the first results from a major new study sponsored by Pfizer and supported by the European School of Oncology, entitled ‘Global status of advanced/metastatic breast cancer: 2005-2015 decade report’, in which patient care perspective and public understanding have been surveyed across as many as 34 countries, and which also reports on scientific progress (disclosure – I am on the steering committee for the report).

Big gaps remain in areas such as patient communication, involvement in decision-making, and public awareness, where many people still think metastatic breast cancer can be cured, and some prefer women not to talk about it. Dian ‘CJ’ Corneliussen-James, of US group METAvivor, told the audience that prejudice is still a major problem, and that metastatic patients can be made to feel unwelcome by some advocacy groups. There are indications that overall, quality of life may not have seen much improvement.

Dian ‘CJ’ Corneliussen-James spoke about prejudice still affecting metastic breast cancer patients

Dian ‘CJ’ Corneliussen-James spoke about prejudice still affecting metastatic breast cancer patients

In the final session at ABC3, the consensus panel voted on new and changed statements in the guidelines, which will be published next year. There was heated discussion about some while others sailed through.

Briefly, there are important new statements concerning the use of objective benefit scales to assess drugs (e.g. from ESMO and ASCO), which may help to control costs, and on the need to design clinical trials that answer practical questions such as the sequence of using agents.

There are also new statements on survivorship, which is becoming more important as the number of women living with advanced disease for longer rises, and on several supportive care issues.

The consensus panel vote on new and changed statements in the guidelines

The consensus panel vote on new and changed statements in the guidelines

There has only been one new drug approved for the metastatic setting since ABC2, palbociclib, but new data on other drugs such as pertuzumab have changed some statements. The point was made in the conference that innovation in advanced breast cancer is now lagging other tumour types, such as lung cancer and melanoma.

Overall, the conference was notable for the continued integration of patients and those supporting patients into the programme. A highlight was Anna Craig, a young mother from the US, and her video, I am Anna, which was screened for delegates.

See @ESOncology and #ABCLisbon for tweets.

Closing the 40% survival gap in Gaza

 

shayma wahaidi cropped

Shaymaa Al Wahaidi is a pharmacist trained in public health who is about to return to Gaza to support efforts to improve diagnosis and care of breast cancer patients

In Gaza, only around 50% of women diagnosed with breast cancer will still be alive five years down the line, compared to almost 90% in countries like the UK and USA.

 

I’m a Palestinian pharmacist from Gaza, and I’m about to return there after completing a Public Health course in Oxford, with a view to becoming a public health researcher. My current interest is the lack of support for early diagnosis for women with breast cancer in Gaza. I used to work with breast cancer patients, and I’ve noticed that women in Gaza often present late for diagnosis and have many fears associated with the disease.

 

The poor rate of breast cancer survival partly reflects cultural attitudes about breast cancer. Some women, for instance, worry about being divorced if they were to be diagnosed with the breast cancer. As result, even if they suspect that they have breast cancer, they sometimes prefer to keep silent and die waiting.

 

But women can also be deterred from seeking a diagnosis because they know how hard it can be to get access to treatment. Once diagnosed with breast cancer, women face many challenges, and it has been suggested that their treatment in Gaza is below acceptable standards. A few years ago, the Ministry of Health had to appeal to international bodies after stocks of almost 15% of essential chemotherapy drugs ran out, and adherence to scheduled treatments for breast cancer was impossible due to the erratic supply of medicines.

 

This problem has not been resolved. Last December, breast cancer patients in Gaza organised a demonstration in protest that the medication they need is still not available, and even when it is available, it is unaffordable.

 

Part of the problem is poor use of meagre resources. There’s only one histopathological laboratory, and there are no facilities for radiotherapy. And yet there are currently four mammography units in Gaza, despite the evidence-based research that challenges whether women in general derive any benefit from mammographic screening. Most of the time hospitals cannot import the chemicals used for the mammography X-rays anyway. Considering Gaza’s disastrous economy – half the population lives on less than $3 per day – spending money on mammography facilities, which charge around $27 per appointment, is not justifiable.

 

It is my hope that we can start to improve the situation for women and for breast cancer patients in Gaza if we start to direct research attention to how we can improve our healthcare facilities, train up personnel in breast cancer investigation and treatment, and improve adherence to treatment guidelines.

 

We also need to conduct detailed investigations to understand more, for instance, about women’s experiences and perceptions regarding adherence to treatment, and about their quality of life and their experiences after mastectomy.

 

As long as health services in Gaza are unable to offer adequate treatments for breast cancer patients, Palestinian women will continue to die from a disease which in many countries is seeing increasingly high survival rates. In addition, until significant steps are taken in early diagnosis, women will continue to present at a late stage of the disease, when the chances of prolonging their lives are reduced.

 

I hope that when I return home in a few weeks’ time, I will be able to use what I’ve learned to start to make a real difference.

Breast cancer patients and survivors help other patients by sewing prosthetic breasts that are distributed free

Breast cancer patients and survivors help other patients by sewing prosthetic breasts that are distributed free

The multiple problems women with breast cancer face in Gaza have been captured in a moving animation, “Fatenah”, which follows the journey of one woman from her delayed diagnosis to the multiple delays, stress and humiliation involved in getting access to the right treatment 

Fatenah

 

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Only one day for advanced breast cancer

Marc Beishon

Marc Beishon

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

A patient's blog

A patient’s blog

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.

mbc coverAgain 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

abc2The 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.

abcinfo2