Hereditary Breast and Ovarian Cancer (HBOC) Awareness

It’s that month again: Ovarian Cancer Awareness Month.  I have my toes painted teal and have handed out Teal Toes cards (www.tealtoes.org)!  I printed B.E.A.T. flyers from the National Ovarian Cancer Coalition (www.ovarian.org) and put them up at useful places at my work.  Ovarian Cancer Awareness Month is definitely less well known than October’s Breast Cancer Awareness Month, but is nonetheless extremely important.   

Last September, I wrote a post describing the differences between how my Mother and her sister were diagnosed with ovarian cancer.  Their stories are very different with regard to their symptoms, how their cancer was found, what stage their cancers’ were at diagnosis, etc.  My Mother was 49 when she lost her battle to this disease after fighting for 4 ½ years.  My Aunt was 52 when she lost her battle; less than 2 years following her diagnosis.  My Mother’s diagnosis came about 4 months after losing her sister to ovarian cancer.  I cannot even imagine how extremely scared she must have been.  Having a jerk doctor provide her original diagnosis and tell her she only had 6 months and all he could do was make her comfortable, didn’t help matters. 

The one thing that was not different between my Mother and Aunt was their family history.  They had lost their Mother from breast cancer when she was only 47 years old.  Their Mother had lost her own Mother from ovarian cancer at age 43.  Due to this family history and her own personal history (breast cancer at age 37, ovarian cancer at age 45) the doctors told my Mom that she probably had a genetic mutation.  She was diagnosed in 1994 and passed away in 1998, so all of the genetic testing information was still pretty new during that time.  The doctors also told her that most likely 2 of the 3 of us (her daughters) also had a mutation.  She did not want to get tested because she didn’t want to have her insurance drop her coverage – it was already so expensive for all of the cancer treatments, even with insurance!  She also didn’t want to cause a problem for us girls to get insurance coverage due to a genetic mutation.  Back then there weren’t the laws that are in effect now, such as the Genetic Information Nondiscrimination Act (GINA).

My oldest sister was tested in 2002 and because it made her feel more comfortable, paid for her genetic testing out of her own pocket.  My middle sister had her testing in 2005 and also paid for hers.  I had my genetic testing in 2008 when my husband and I knew we were done having kids.  My insurance covered my genetic testing.  I have been extremely fortunate with my experiences with insurance companies during my BRCA experiences.  Unfortunately, some women have to argue and fight for their genetic testing, screening procedures (MRI, mammograms, pelvic ultrasounds, etc.) and prevention procedures (prophylactic mastectomy, reconstruction, prophylactic oophorectomy, etc.).  I have not had to argue for my testing, screening procedures or prevention surgeries and our insurance has even changed a few times since my BRCA1 positive results.  I think most insurance companies realize that paying for screening or prevention procedures actually saves them money in the long run.  Although it costs money for the surgeries, those expenses are nothing compared to the monthly (and yearly!) costs of treating someone for cancer.  If I had not had a prophylactic mastectomy, but instead waited to get breast cancer, the insurance company would have then had to help pay for the surgeries anyway, but also chemotherapy, possibly radiation, endless blood draws, and the list goes on.    

The last week in September is National Hereditary Breast and Ovarian Cancer (HBOC) Week; and the last Wednesday of September is National Previvor Day.  Last year (2010) a Congressional Resolution was passed to make these two things possible.  This week lies right between Ovarian Cancer Awareness Month and Breast Cancer Awareness Month.  A previvor is a survivor of a predisposition to cancer (www.facingourrisk.org).  I am a previvor because I have a genetic predisposition to breast and ovarian cancer from my BRCA1 mutation.  If you want more information on previvors check out the FORCE (Facing Our Risk of Cancer Empowered) website above, which I have also blogged about previously.  For great information and resources about HBOC see the FORCE website and also Learn About HBOC.

There have been major advances in research and the medical community involving genetic mutations and preventative measures.  And the HBOC community has had extensive growth, with increased education, support and outreach.  I have been given the opportunity to prepare and have choices my Mother, Aunt, Grandmother and Great-Grandmother weren’t given.  I was given the chance to take a preemptive strike against cancer before it reared its ugly head in my body (well, at least in my breasts for the moment, my ovaries will come out soon).  I am so thankful to have the knowledge, options and support I do.  I am making choices, albeit difficult ones, in order to stop the pattern HBOC has had on my family for generations.  I will live past 50.  I will beat BRCA. 

So, Happy National Hereditary Breast and Ovarian Cancer Week and in a couple days, Happy National Previvor Day!     

Here’s a list a great resources:

http://www.ovarian.org/
http://www.ocrf.org/
http://www.ovariancancer.org/
http://www.cancer.org/
http://www.cancer.gov/cancertopics

Until next time, here’s to scientific advances, education, and awareness! :)