Young Women Metastatic Breast Cancer (MBC) Survey Question Title * 1. Which of the following common misconceptions of Metastatic Breast Cancer (MBC) do you find the most troublesome? “Pinkwashing”- the belief that purchasing a pink ribbon item saves lives The commonly held belief that early detection saves lives and the reality of the 30% progression rate The fact that many of us appear “healthy” Other (please specify) Question Title * 2. Which of the following treatment-related issues do you find the most troublesome? Lack of treatment funding/inclusion from government entities (DOD), big pharma, and non-profit organizations Treatment for LIFE Indecisiveness/lack of unity in the MBC community Misleading SEER statistics and poor long-term patient follow-up A “one-size-fits-all” treatment approach to large segments of patients Other (please specify) Question Title * 3. Which of the following personal/life issues do you find the most troublesome? Relationship challenges- intimacy, communication, alignment of expectations Workplace issues- discrimination, goals, time off for treatment Financial issues- insurance, disability, etc. Parenting- talking to children about our illness, energy level, fear of missing out on key milestones Managing treatment-related side effects Other (please specify) Question Title * 4. Where do you primarily get most of your peer-to-peer encouragement/support? Social Media- Facebook/Twitter Online forums- Inspire/BCO Discussion Boards Support groups Personal relationships developed with MBC patients outside of support groups Phone help hotlines Other (please specify) Question Title * 5. Where does your spouse/significant other prefer to discuss their feelings/fears openly? Caregivers support group Licensed counselor Pastor or social worker Friends and family My spouse/significant other or parent doesn’t discuss feelings or fears openly I do not have a spouse/significant other or parent Other (please specify) Question Title * 6. Where does your parent(s) prefer to discuss their feelings/fears openly? Caregivers support group Licensed counselor Pastor or social worker Friends and family My parent(s) don’t discuss feelings or fears openly I do not have parent(s) Other (please specify) Question Title * 7. Where do your children or grandchildren prefer discuss feelings/fears openly? Caregivers support group Licensed counselor Pastor or social worker Friends and family My children/grandchildren don’t discuss feelings or fears openly I do not have children/grandchildren Other (please specify) Question Title * 8. On which MBC advocacy topics would you like to be better educated? How to educate others about our disease How to influence key decision makers to invest in MBC patients How to raise funds or MBC research How to encourage, connect, and support others Reaching outliers and exceptional responders with MBC Other (please specify) Question Title * 9. On which MBC clinical topics would you like to be better educated? Ongoing and upcoming Clinical Trials Biology- interpreting your pathology Interpreting your scan results Genetics and the role they play your diagnosis and treatment How to communicate with your oncologist to ensure your needs are met Question Title * 10. Are you currently more interested in learning about MBC clinical topics or MBC advocacy? MBC Clinical MBC Advocacy Question Title * 11. When you were initially diagnosed with metastatic disease did your care provider accurately explain what metastasis was? Yes No Additional Comments Question Title * 12. When you were diagnosed with metastatic disease, did your care provider make it clear that you were being diagnosed with a terminal disease, meaning there is no cure? Yes No Not completely Additional Comments Question Title * 13. Do you feel as though your care provider has given you the information you need to feel confident in making your treatment or palliative care decisions? Yes No Not completely Additional Comments Question Title * 14. Have you relied upon information provided online to make treatment or palliative care choices more than information from your care provider? Yes No Additional Comments Question Title * 15. Do you feel as though a lack of scientific knowledge regarding cancer and metastasis has hindered your desires or ability to be a patient advocate or to be an advocate at the level you would like i.e. be able to review grants or participate on science steering committees? Yes No Additional Comments Question Title * 16. Would you be interested in learning the basic science behind cancer and metastasis through videos and written material designed by leading metastatic cancer researchers? Yes No Additional Comments Question Title * 17. Would you feel more confident in making treatment decisions if you had a better understanding of the basic science behind metastatic disease and cancer therapies? Yes No Additional comments: Question Title * 18. If you could ask metastatic cancer researchers anything, what would it be? (For example: Why is metastasis so difficult to treat?) Done