When you bring us all together….

Recently I spent a wonderful afternoon sharing stories with friends who are also facing BRCA here in Northern Virginia.  As I sat listening to their stories I felt my heart break with as each person shared  experiences.  So many mothers lost at a young age.  Judgement from others as we choose genetic testing and prophylactic surgeries.  Surgery complications.  Fear.  Pain.

I realized when you bring us all together, we have all been through our own special version of hell.

  • We have watched generations in our families suffer through cancer…
  • We often find ourselves explaining to the outside world why our choices –though agonizing — are necessary for our survival.
  • We are asked to fundraise but expected not to care whether this money translates into better options and outcomes for us.
  • Even after winning our case in the Supreme court, we are still commoditized and monopolized by a company that never learned how to share.

The other common thread when you hear our stories is that we chose to find out something scary about our future and to deal with it proactively.  I started thinking about this.  We are lawyers, housewives, moms, entrepreneurs, daughters, designers, artists…and so much more.

But when you put get us all together, we are incredible.  We are smart.  We are resilient.  We adapt.

We have this collective identity as Previvors when you hear our stories.  And I’m learning we have something else that is very valuable.  We also have data.  And it’s this genetic data may be the key to unlocking smarter ways to prevent cancer for our children.

What can we do about it?  

I know what I want to do.  I want to find smarter and better ways to prevent cancer so that the next generation in my family won’t have to face the same difficult choices that I had to make for myself.  I want to prove to the world that our data is more than a just commodity or an abstract concept.  Rather, our data is part of our identity.  And our identity deserves to be treated with respect….as something that belongs to us.  I want to share our data to people who can treat our data with the dignity and respect that it deserves, as we work together to find better options to end our suffering.

 

 

 

6 Comments

  1. You are a force to be reckoned with! Now we need to start the process of reclaiming our own data and pool it together for some meaningful research to take place. The question is how.

    Now that the Myriad patent has been overturned, I feel hopeful for the future generation of people with the BRCA gene mutation!

  2. So very true. I have always had a fear of the “cancer” identity. My mother quickly became obsessed with the ‘pink ribbon’ merchandise. But, we have to continue to create awareness (regardless where the real money goes *cough* Komen) because, I need my daughters to have more options. ♥

  3. It was really awesome to hang out with such a great group of women. I’m so glad you were able to come.

    You got a lot of us thinking that day – about this data thing – any suggestions or thoughts of what we (that ‘we’ is the collective we) can do about it?

  4. Teri – This is the BIG question in my mind too! And I wish I had the perfect answer but I’m not there yet. I think the first step is understanding what makes our data is valuable for research. For example, I’m learning more about the legal landscape of genetic data, and how BioBanks work. I found this great resource from Faster Cures that I think lays things out really well:

    http://www.fastercures.org/assets/Uploads/BioBankingWeb.pdf

    As I learn more, I’ll keep posting about it!!

  5. Andrea, The more I think about it, the more I realize that BRCA carriers and metaplastic BC patients have a lot in common. I’m not a BRCA carrier but I know that there has to be a gene or mutation in my cells in order to produce such an odd type of cancer.

    MpBC is pretty rare so not much is known about it. However, many researchers believe stem cells play a role in our cancer and many others believe that studying MpBC will lead to more answers than studies of traditional cancer. I think it is the same with BRCA patients. The studies surrounding this genetic mutation are likely to bring research into BC forward much more quickly than the study of IDC.

    I’m not BRCA + but I’m with you. I have genetic material that I’ll gladly offer up to researchers who will start moving research into cures and prevention forward.

    BTW, where are you in NOVA? I am in Oakton.

    • Maria, Thanks so much for your reply! I keep coming back to this question: how do we work together as a community to learn more about the genetics of cancer? The more I read, the more I learn that each and every cancer is rare and we stand to learn a lot just by creating a mechanism to share our information with researchers.

      And to your BTW….I’m in Falls Church! Close by!!

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