Whenever I go online or give talks, I am struck by the women and men who approach me to ask questions. They always feel that the research that is reported is interesting but that it doesn’t relate to them or their situations.  This is particularly true if the person I am talking to is not a white woman with a standard kind of breast cancer. I certainly understand.  When I was diagnosed with leukemia, I kept searching the studies for one that would reflect the experience of someone just like me with exactly the same kind of cancer.

 

While it’s natural to be frustrated by our inability to predict what will happen in each of our cases, there is a solution: Participating in research!  When we participate in the research, that research will reflect our experience as well as our ethnicity, culture and genes.

 

The Army of Women works hard to encourage researchers to be more inclusive but it won’t get us anywhere if there are not enough women and men willing to be in the studies.  We need more male participants, young participants, African Americans, Hispanics, Asians, and Native Americans as well as women from Middle Eastern countries or with mixed ancestry in the Army of Women. The more ethnic, gender, cultural and age diversity we can build into the Army of Women, the more we can convince researchers to broaden their reach.

 

And indeed we do have some relevant studies coming soon! For example, soon to be launched to the Army of Women is a study looking at breast density in African American women versus African immigrant women.  We also have a study on breast cancer risk for Hispanic women coming up in January.  But we need everybody represented in all studies.  Our own ongoing study, the [HOW] Study, needs more men and women of all ethnicities and combinations thereof, with and without a breast cancer diagnosis, to contribute data on their health histories and experiences.

 

The only way that research will reflect all of us is if all of us participate.  So stand up and be counted!

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2 Responses to Why Doesn’t the Research Represent Me?

  1. Anne-Marie says:

    Even when the research is there, it takes forever to be implemented in the front lines and/or have the cost covered by healthcare systems/insurance. The Oncotype DX is a supreme example of this – a simple $4,000 test that determines the patient’s risk of recurrence and whether or not that risk would be reduced by chemo – thereby saving the healthcare systems millions of dollars – and yet it’s still not been universally-implemented. One must assume that hundreds of women are still being given chemo under “one size fits all” policies who will suffer the effects of it yet not benefit from it! The same applies to the $300 test to determine if the patient has the enzyme necessary to metabolize Tamoxifen that they’ll be taking for 5 years. I’m cynical enough to believe there must be a lot of vested interests that are profiting from keeping things the way they are and that’s why new research isn’t getting to the front lines!

  2. Teresa Masters says:

    I paid for my own gene testing, prior to the decision about the breast cancer gene exclusivity. I received an alert about two substances, caffeine and methotrexate, interesting. I decided against oral chemo for five years, following my lumpectomy and brachytherapy.

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