Wow! We obviously hit a nerve with our recent call for questions regarding collateral damage from treatment. Over 800 of you responded to our call for questions and an additional 200 people signed up for the Health of Women Study. If you haven’t responded yet it is not too late. We will continue to crowdsource questions through October in order to develop a questionnaire for the HOW study that will truly reflect the experiences of all of you who have been diagnosed with breast cancer or are at high risk. Send your questions about the side effects you’re experiencing from treatment (a la Jeopardy) to HOW@dslrf.org. And of course we need all of you to sign up for HOW and fill out the first questionnaires. Our goal is to launch this new module on collateral damage early next year.
We are doing this as part of HOW, a bigger long term study, so we can do more than just catalogue the problems you experience; we can also do some analysis to try and figure out who is more likely to experience them. For example, are women with restless legs more likely to experience neuropathy from chemotherapy? Is chemobrain more of a problem in people with a family history of Alzheimer’s disease? And to compare the women and men who have experienced breast cancer treatment to those of the same age who have not so we are not attributing to treatment symptoms that are actually due to age or the vagaries of life. Finally, having a lot of people who have experienced breast cancer or are at risk in this long term study will also allow us to do something I have always wanted to do: figure out why some women with what looks like the same disease and treatment have different outcomes. In traditional medical research, we study the people who “fail” the treatments, in other words those who the treatments have failed. But we rarely if ever study the ones who we expected to do poorly but instead did well! What are they doing differently? What can we learn from their experience?
We believe that including your voices in designing this study will give the medical community new insights for research, as well as providing a model for changing the way research is conducted in the future.
So thanks to all who responded and signed up already. We need ALL of you, both with and without a breast cancer diagnosis, to join HOW and help us document the real cost of breast cancer physically, mentally and financially. That is the only way we can shift the research emphasis from one largely based on treatment to one based on finding the cause and prevention!