To progress on a journey, you need to know your destination. Sure, some journeys are simply about the experience, like a trip to Europe after college, where the meaning is wandering and you can hop the next train and get off when you’re ready. That’s wandering for it’s own sake.
But when it comes to breast cancer we need a destination; we need more than “awareness.” In fact, we need more than survival. We need to focus on what that survival looks like.
This is where you come in.
You may be familiar with the Dr. Susan Love Research Foundation’s HOW [Health of Women] study. The goal of HOW is to have a database of women – those who have or have had breast cancer, as well as those who have not – from which to draw data through periodic questionnaires. With 20,000 participants on board, HOW is already at 25% accurral. If you haven’t joined up, you can do so at www.QuestionTheCure.org!
Dovetailing with HOW, DSLRF has just launched The Collateral Damage Project. The goal of the project is to truly represent all of us and our experiences with breast cancer treatment, to discover the challenges, disappointments, problems with “survival,” from short-term effects of treatment to long-term impact (like the fact that my veins now hide from the phlebotomist’s needle). The goal is to really understand.
Phase I is to discover the “right” questions: What price have you paid for your treatments? What has the impact of chemo, radiation or surgery been both physically and emotionally? You can add your thoughts and concerns, have your voice heard, at www.QuestionTheCure.org. It will take two minutes!
Your comments will allow for Phase II, the first-ever patient-curated breast cancer questionnaire, which will be launched through the HOW study. The goal of that project will be to quantify our “on the ground” challenges and experiences with treatment.
In an effort to reach as broadly as possible, the DSLRF will be partnering with other breast cancer organizations such as Susan G. Komen and Young Survival Coalition. I hope they will be partnering with YOU too!
Please…this is information we all need. Take two minutes to lend your voice at http://www.QuestionTheCure.org.