Megan’s Story

Site created on November 7, 2019

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Newest Update

Journal entry by Megan Sussman

Everybody knows that October is Breast Cancer Awareness Month.  Hardly anybody knows that today, October 13th, is Metastatic Breast Cancer (MBC) Awareness Day.  Only 2-5% of breast cancer research dollars go to the research of MBC even though 30% of women who are diagnosed with early stage breast cancer will later develop MBC.  A smaller percentage of women (around 10%) have an initial diagnosis of MBC.  I am one of these women.  

The research dollars should match the figures with 30% of funding going to MBC.  Only 20 to 25% of women with MBC survive beyond five years.  with the median survival rate being 36 months.  These are pretty grim statistics but they highlight the desperate need for more research funding to be devoted to metastatic cancers. 

I have been working with an organization called Metavivor which is a non-profit devoted exclusively to advocating for and getting research funding for MBC.  I participated in their annual Stage IV Stampede which involves lobbying house and senate members to pass bills pertaining to access to care for MBC patients and get more funding for research.  I had the pleasure of participating in a virtual meeting with a staffer from Kamala Harris' office and about 12 MBC survivors. 

Friday will mark the one year anniversary of my diagnosis.  Crazy!  I am marking my first year of survival with a hiking trip to Zion!  Because (yeah I know you're not supposed to start a sentence that way), the reality is, several months ago, I wasn't sure that I would be able to go on any more hiking trips.  But, I can now so why not?  Who knows if and when that will change.  As Wilhem's lucky chemo socks say "Carpe the F*** Out of this Diem"  And the darn things actually did work!

  Healthwise, I am doing really well.  Unfortunately, I am the exception to the rule.  And, the reality is, that could change at any time.  And that, is the reality of any metastatic cancer diagnosis.  it was very inspiring meeting all the women from Metavivor.  There is a women who has been living with MBC for twenty years!   Hopefully, one day we can get to the point where MBC is a chronic disease and not a terminal one.


    

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