Metastatic Breast Cancer – A Different Type of Breast Cancer
A metastatic breast cancer (MBC) diagnosis is life-changing. Metastatic breast cancer is when breast cancer spreads beyond the breast to other organs and is currently incurable. The MBC community is a smaller subset of the broader breast cancer community and while there are a number of similarities in experiences among those who have been diagnosed with breast cancer there are just as many differences for those who are late-stage.
In order to understand more about this subset, we conduct a large survey of those patients who are living with advanced breast cancer. 546 advanced-stage breast cancer patients responded and of those 463 are metastatic and shared their experiences. Of those surveyed in our 2nd Annual Advanced Breast Cancer In America survey, 85% of metastatic patients relate most to other advanced/metastatic breast cancer patients.
There are unique considerations and experiences for those who are living with metastatic breast cancer, specifically in terms of treatment and making treatment decisions. By sharing the results of our survey, we hope to highlight these differences and increase awareness for metastatic breast cancer so others can understand what life is really like for these patients.
Treatment is life-long
One of the biggest differences for stage IV or metastatic breast cancer patients is that there is currently no cure and their treatment will never end. These patients will never ring the chemo bell or have any other celebration to signify the end of treatment. The focus of treatment for advanced disease is to work as well as possible for as long as possible while allowing the patient to maintain their quality of life. MBC patients stay on treatment until their cancer progresses and then will move on to another treatment in the hopes that cancer will respond to the new therapy. Another part of the treatment and management of life with metastatic breast cancer is monitoring and scans. More than ½ of the respondents cited they were monitored at least once a month.
Navigating treatment options
Making treatment decisions for metastatic breast cancer can be complex and overwhelming. There are a number of different treatments available and it can be helpful to gather as much information as possible. To aid in the decision-making process, a second opinion may be considered. In most cases, a second opinion can help find or confirm a treatment plan. Over half of those who took our survey sought a second opinion with another healthcare professional at some point during their care. In addition, less than ½ of the respondents surveyed stated they feel controlled on their current therapy, and this can be another reason to consider a second opinion.
Clinical trials as a treatment option
When one treatment stops working for metastatic breast cancer patients, they move on to another. At some point, clinical trials can offer a potential additional treatment option and hope to certain patients, especially those for whom standard therapies have not worked.
For many MBC patients, it is helpful for them to read about treatments or alternative medicines that might be of interest or a potential option in the future. Again, treatment is life-long so in most cases, a new treatment or medication may need to be considered at some point. In most cases, education and awareness can help give patients a sense of empowerment and a voice in treatment decisions. In this survey, other than their healthcare professional, we saw online resources as the most popular source of information among advanced respondents.
What information is helpful for a metastatic breast cancer patient to know?
Respondents generally feel confident about their ability to use the internet to learn more about their health. Since treatment is life-long, most people living with advanced or metastatic breast cancer are interested in staying up-to-date on drug approvals, clinical trials, and more. This way they can be prepared when they may need to consider a new treatment. In addition, while each patient’s treatment is individualized, respondents felt it was helpful to hear treatment experiences from others in the community.
The Advanced Breast Cancer in America 2020 survey was conducted online from September 10, 2019, through February 10, 2020. Of the 546 advanced stage people who completed the survey, 463 are currently living with metastatic breast cancer.
Do you find it easy to advocate for yourself?