Global survey wants to know the truth about working with metastatic breast cancer

The Metastatic Breast Cancer Advisory Group invites BCNA members with metastatic breast cancer to complete a short survey about their experiences of working after their diagnosis.

The survey has been developed by the ABC Global Alliance, a not-for-profit association in Portugal. The Alliance’s goal is to improve and extend the lives of women and men living with advanced breast cancer or ABC (also known as metastatic breast cancer) in all countries worldwide and to find a cure. It also raises awareness of ABC and lobbies worldwide for the improvement of the lives of people with ABC.

BCNA is a partner of the Global Alliance and BCNA’s CEO, Kirsten Pilatti and Chair of the Metastatic Breast Cancer Advisory Group, Andrea Smith are both appointed board members.

Andrea Smith says the decision to keep working after a metastatic diagnosis is rarely straightforward given the disease progression varies considerably.

‘With an early breast cancer diagnosis you can reasonably expect to have typical stages of surgery, treatment and recovery, whereas metastatic diagnosis has no standard pathway,’ she says. ‘Some women and men have periods of wellness and then suddenly become acutely unwell. This unpredictability can make work difficult for both people and their employers.’

Andrea says there is a general lack of understanding about what a metastatic diagnosis means, causing employers to make assumptions about what a person with metastatic breast cancer can and can’t do.

‘My work has kept me going. I get an immense sense of satisfaction and purpose from my work, and even though I am a researcher in the cancer space, it took me five years to divulge my diagnosis to my workplace,’ she says. ‘I was worried about the stigma and having to deal with people’s reactions. I was also worried that it would become a career-limiting move, like I have seen with others with metastatic breast cancer who found themselves side-lined once they revealed their diagnosis at work.’

The ABC Global Alliance has a Global Charter of 10 priorities, one of which is to help people with metastatic breast cancer to continue to work. Its survey gives people the opportunity to share their experiences.

ABC Global Alliance Chief Operating Officer Roberta Ventura acknowledges that work can mean different things to different people.

‘For some it’s a passion, while for others it’s simply a way to earn money. Some find that it gives their life a structure, while for others it provides an important social outlet. For people with advanced breast cancer, remaining active and productive for as long as possible can be crucial, not only financially but also psychologically and emotionally; it’s an integral part of wellbeing,’ she says.

Roberta says the survey will become part of the Alliance’s new awareness campaign focused on helping patients with metastatic breast cancer continue to work by implementing legislation that protects their right to work and ensures flexible and accommodating workplace environments.

‘The Alliance would like to hear about your experience related to work and metastatic breast cancer. Whether you’ve been diagnosed or you know someone who is – and whether you’re working or not – we’d love to hear what you think so we can create awareness of this important topic,’ says Roberta.

Andrea urges BCNA members with metastatic breast cancer to complete the survey.

‘Surveys such as this one are an opportunity to speak up and raise awareness about the challenges of living with a metastatic diagnosis,’ she says.

The short survey has three simple questions and is open for all women and men with metastatic breast cancer. You can complete it online here: Working with Advanced Breast Cancer (ABC) (workingwithabc.com).

Some of the responses will be selected to appear in a short video to be launched in November, and some will be shared on a virtual wall of stories that will be published on the ABC Global Alliance website.

For more information and support about work and breast cancer visit the Work and Breast Cancer Hub.

 

Issue 89
Spring 2021