Recently, I celebrated my 5-year anniversary at CBCN. The thing that has become the most evident to me over these 5 years is that every single person’s experience with breast cancer is unique. Just when I think I’ve heard every story, I meet or hear from someone new and am reminded that every person diagnosed with breast cancer in this country has their own set of experiences and challenges to overcome while dealing with their diagnosis.
It’s these unique experiences that motivated us to learn more about the women and men in Canada who are being diagnosed each year with breast cancer. We started asking each other questions and then to members of our board of directors, all of whom are patients or survivors. We want to better understand the unique experience of being diagnosed, what was helpful and what could have been improved; what treatment you received and what can be done better to support people as they go through treatment. We want to know how this diagnosis impacted your daily life and what supports were helpful or what could be offered to better support people facing breast cancer.
We work a lot with women living with metastatic disease, specifically around the challenges they have accessing treatment and support medications. There is never enough money, support or information for women living with mBC but how can we continue to provide opportunities to close this gap in information and get people access to drugs that are so urgently needed?
We are always trying to better the information we provide to you. So far, this year, we’ve launched a new website, full of current and easy to understand information starting from diagnosis through to living with and/or after treatment. We’ve launched a dynamic tool to help women and men living with metastatic breast cancer find information about what drugs are currently available and publicly funded in their province. And, most recently, we’ve launched this new blog allowing us to continually publish updates on research, stories from the community and in-depth information on the topics of importance to you.
We want to know as much about you and your experience as we possibly can so we can make sure our education and advocacy programs properly reflect the issues affecting Canadians with breast cancer. Tell us about your type of breast cancer and how you were diagnosed. Were you told about your breast density or the BRCA mutations? Tell us about your treatment and the resources that were available to you. What about your experience with breast reconstruction? We want to know what your life is like now that treatment is over. Or, for those still in treatment, what information are you accessing to help you on this path? Finally, we want to know how we are specifically helping you and how we can do better.
The survey is long but we think it’s worth it. So tell us everything, don’t hold back.
Ps. You could win a $100 Visa gift card to spend as you wish.
Take the survey here. We’ve got one for early staged breast cancer and one for metastatic breast cancer.