Over the summer, two of my blogs received the most positive attention. One was on the collateral damage of cancer treatment and the other focused on the need for the breast cancer advocacy groups to work together on particular projects. As the Pink Fog of October descends on the land, I am excited to announce that Susan G. Komen and the Young Survival Coalition and others have agreed to collaborate with us on the Collateral Damage Project. This unique team will be seeking media opportunities to talk about the Project over the month asking women and men to send their collateral damage questions, topics and experiences to www.questionthecure.org.
So far our DSLRF folks have sent us almost 3000 questions! The top topics in order are:
- Pain in joints/arthritis 18%
- Memory 10%
- Numbness/neuropathy 10%
- Anxiety/Depression 10%
- Sexual problems 8%
Others include hair loss, fatigue, weight change, early menopause, problems with nails and teeth, insomnia, smell and taste problems, vision and hearing problems, skin changes and balance/weakness! Obviously we have only begun.
We hope that this effort to “crowdsource” the questions for the study will demonstrate both a new model of collaboration among breast cancer groups as well as a new model of asking the patients/public about what should be studied.
Using the [HOW] Study will let us match the collateral damage to your age, time since diagnosis, treatment, type of cancer and other medical history. This should give us a powerful way to document the cost of the cure and report it back to you and the world.
Collaboration and collateral damage….what a way to start October!