In my message to you in our March newsletter, I told you about an important new project for Dr. Susan Love Foundation for Breast Cancer Research – the Metastatic Breast Cancer Collateral Damage Project. We took on this project to document the full extent of the life-altering impacts of the disease and its treatment faced by people with metastatic breast cancer (MBC). Our intention is to develop recommendations to improve quality of life (QOL) for people living with MBC.
The Foundation’s overall goal is still to end breast cancer, of course. But until we get there, we want to do what we can to lighten the profound impact that collateral damage has on MBC patients today. There’s no arguing that metastatic breast cancer patients are the ones collateral damage hits the hardest.
Later this summer, we’ll be asking MBC patients to complete a questionnaire that will give us the data we need to scientifically measure the impact on QOL. You may have seen our request for MBC patients to complete a quick five-question survey last month. The feedback from that crowdsourcing survey is now being used as the basis for developing the questionnaire, along with data from a previous QOL questionnaire. This is how we are using the real-life experiences of breast cancer patients to ask the questions that will measure all collateral damage, not just the typical things researchers like to ask about. And once again, we are turning to our diverse Advocate Task Force for their guidance and wisdom in shaping this questionnaire.
I thought you might like to hear some of the responses we gathered in the recent crowdsourcing survey. The participants’ answers truly demonstrate the urgent need for the Metastatic Breast Cancer Collateral Damage Project.
Of the 352 people who took our survey, 347 were women, three were men, and two were transgender individuals. The median age was 55. On average, they received their first breast cancer diagnosis five years ago and their diagnosis of metastatic disease two years ago.
What these people told us was heartrending. They talked about severe and constant pain, crying uncontrollably, having to declare bankruptcy, losing their jobs, losing their friends, losing their futures. They said that routine chores seemed overwhelming, that they couldn’t plan for vacations, or marathon-shop with their kids anymore, or play with their grandchildren, or plant flowers in their gardens. Collectively, they expressed that they had suffered collateral damage in every aspect of their lives – physical, functional, psychological, emotional, social, vocational, and financial.
The people who answered us feel that the general public, and even healthcare providers, don’t know enough about metastatic breast cancer and the havoc it creates. And they feel that their needs are, to a great extent, unmet.
It might seem that our next step, the formal questionnaire, is a repeat of the crowdsourcing survey. But it’s not. The crowdsourcing allowed a small, but statistically significant, group of people to share the breadth and depth of their collateral damage. But that survey by itself is not enough to make recommendations for changes to how healthcare is delivered to MBC patients. For that, we will need many more hundreds, if not thousands, of people to participate in the questionnaire we’ll be sending out soon. The responses to that questionnaire will enable us to capture and quantify every aspect of the collateral damage of metastatic breast cancer and its treatment. Once we can demonstrate what isn’t working right now, we can make recommendations for how to improve it.
As usual, with the Metastatic Breast Cancer Collateral Damage Project, we’re taking the initiative to do what no one else will do. Stay tuned for more information on this vital study in the coming weeks.
P.S. In late May, an article on the inspiration for the Metastatic Breast Cancer Collateral Damage Project was published in The ASCO Post. The article was based on a talk Dr. Love gave at the 2016 American Society of Breast Surgeons Annual Meeting earlier this year. Read about Dr. Love’s own experience with the collateral damage of cancer treatment and how that led to the Foundation’s exploration of breast cancer collateral damage.