Monday, September 27, 2010

National Hereditary Breast & Ovarian Cancer Week is here!

This week is the first ever National Hereditary Breast and Ovarian Cancer (HBOC) Week.  Why have you not heard?  Likely because Congress did not act to declare this week National HBOC week until September 15th, which did give much time for getting out the word.  Nonetheless, FORCE, Facing Our Risk of Cancer Empowered, has made heroic efforts to let everyone know about this important event through their Raise Your Voice campaign. 

Why do we need HBOC Week?  Every month is an awareness month for something, indeed September is already turning teal for Ovarian Cancer Awareness Month and October is awash in pink for Breast Cancer Awareness Month.  Why do we need more awareness of these diseases?  Isn't this enough? 

For me and for thousands of women like me, the answer is no, it is not enough.  And this is not because we seek to be honored or feel any swell of pride from this national recognition.  Rather it is because we are sick and tired of watching our friends and relatives battle and often die of these diseases when they could have been prevented through the gift of genetic knowledge.  I have watched as breast cancer relentlessly claimed the life of a friend who had never heard the term BRCA until after her breast cancer was terminal.  Even then she did not give up hope, she battled bravely and hard for nearly four years, but in the end, it was the lack of knowledge of her genetic condition that took her life.  Had she known that her mother's breast cancer could also be her fate she could have started surveillance earlier.  Had she known at the time of her first breast cancer diagnosis that her cancer was the aggressive hereditary form of the disease she could have attacked it with chemotherapy rather than just a lumpectomy and radiation.  It was not until the cancer had spread to her vital organs that any doctor ever mentioned genetic testing or the BRCA genes to her.  The medical profession failed her on many levels:  no doctor ever looked at her family history and mentioned genetic testing to her; no breast specialist or oncologist ever mentioned genetic testing to her when she was diagnosed with breast cancer in her early 40s; no doctor ever mentioned to her that triple negative breast cancer in a young women with a family history of breast cancer is more likely to be genetically linked and need more aggressive treatment.  Had she had the gift of knowledge at any of these junctures she might still be here today, walking with me on the beach as we often used to do.  But she didn't.  When she did find out she had a BRCA mutation and learned that mastectomy prevents additional cancers in BRCA-positive women, she consulted surgeons about removing her breasts.  Instead of reassurance, she was told that it was like "shutting the barn door after the horses have already been let out."  Her breast cancer was in her vital organs; removing her breasts would not preserve her life.

So HBOC week is not for me, nor for the few thousand women and men who already know they are carriers of BRCA mutations that put them at high risk.  HBOC week is for the hundreds of thousands of women and men who do not know they are at high risk.  It is for the hundreds of thousands of women whose doctors will never look at their family history and start a discussion about genetic testing.  Those of us who do know need to shout from the rooftops, not for ourselves, but for those whose lives can only be saved by knowing they are at risk.

HBOC Week is opportunity knocking.  It is time that we all raise our voices.


  1. Joi, I am so right with you on this. Perhaps the most stunning thing to me about my own breast cancer experience was how horribly eye-opening it was with respect to the inadequacies of our health care system, particularly with respect to cancer treatment. As a clinician myself, I think I gave oncologists a whole lot more credit than they deserved. Not one of my cancer docs gave me the opportunity to make decisions based on real informed consent, and much of the time, scarcely gave me any information at all. I was and am still appalled by that.

    I'm on that rooftop, shouting right next to you, sistah. XXOO, Kathi

  2. Thank so much Kathi! I think we all naturally defer to the "experts" but it is our duty to do our own research and make informed choices. After all, it is our body and our life.