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Bestbird
Bestbird Member Posts: 2,818
edited August 2020 in Stage IV/Metastatic Breast Cancer ONLY

Greetings,

Please help us gather data on your MBC treatment experience by taking a short survey.

I am involved with the Patient-Centered Dosing Initiative (PCDI) consisting of patient advocates and Medical Oncologists dedicated to improving the lives of individuals with MBC.

People with MBC differ from those with early stage breast cancer in that our disease isn't curable - although it's treatable - and we will usually remain on therapy for the rest of our lives. As a result, many of us may experience treatment-related side effects that can impact our quality of life.

Understanding the current landscape of patients' treatment-related experiences is a vital step towards advancing the PCDI's efforts. Rather than making assumptions, our members believe that obtaining reliable information directly from patients is a key factor for effectively making improvements. We hope that you'll share your experience and enable us to gather data by taking this survey. https://docs.google.com/forms/d/e/1FAIpQLScG75n2T8vELV_5GCZE3y4Lewgz-s9Eq6spUlNDZ9XUB5XHUw/viewform

Thank you!

Anne

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  • LoriCA
    LoriCA Member Posts: 923
    edited August 2020

    Hi Anne, I started to complete the survey but stopped on this question -

    What type of Metastatic Breast Cancer do you currently have?

    Hormone Receptor Positive, HER2 Negative

    HER2 Positive, Hormone Receptor Negative

    Triple Negative ("TNBC")

    Hormone Receptor Positive, HER2 Positive ("Triple Positive")


    I am ER+, PR-, HER2+ (luminal B per the Mayo Clinic's definition) and I don't fit into any of those four categories. Thoughts?

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited August 2020

    LoriCA, Although your PR is negative, please check "Triple Positive". Although "triple positive" can be a bit of a misnomer if someone is ER+/PR- or vice versa, MBC that's hormone receptor positive and HER2 positive is often referred to as triple positive. My apologies for any confusion!



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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2020

    Done! Very quick and easy, so go ahead and take the survey

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited August 2020

    Thank you! Your response and those of others will help the Patient-Centered Dosing Initiative to make health professionals more aware of patients' treatment-related experiences. We're hoping our SABCS 2020 abstract is accepted so that we'll present a Poster of findings!

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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited August 2020

    Hi Anne,

    I also received your email and wanted to confirm, they are only looking for responses from US patients. Correct

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited August 2020

    Sadiesservant, Yes, the survey is limited to individuals solely in the US because the IRB coverage is limited to the US. Since each country or region (in the case of the EU) has its own privacy and data protection regulations, it wasn't possible to investigate and seek approval/dispensation from different areas. I wish it could have been otherwise!

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