The week of September 27 – October 3, 2015 has been designated in the US as National Hereditary Breast & Ovarian Cancer Week with September 30 having the special designation of noting National Previvor Resolutions.
Before my journey of cancer diagnosis and treatment began in late 2008, I had no special affiliation to these types of commemorations and certainly did not have the words ‘previvor’ in my vernacular: however, I’m grateful to be here today to report how much I have learned in the almost seven years since I heard the life-changing words uttered from my physician “Diane, this is cancer.” Of course, my twin sister Denise had been diagnosed with breast cancer at the young age of 33 just six years prior to my diagnosis. Of course, my aunt Inta had died of a breast cancer recurrence when she was only 61 at the end of 1995. Despite these close familial contacts with the devastation of breast cancer only too close, I suppose I hoped that their experiences were just a freaks of nature, a bullet I had dodged effectively. I was underwater with the care of four young children and most moms I knew were all consumed, like me, with the daily care and demands of raising these precious beings. We put our needs and wants last.
That changed, though, when I faced my own cancer diagnosis. I learned through genetic testing available at the time that I had a mutation in my BRAC1 gene and that knowledge helped me and my physicians work through the best course of treatment for me. We also learned that my twin Denise shared the same genetic mutation as I in the BRAC1 gene and that she also had a mutation in her BRAC2 gene. I still recall the day she called me and told me that, despite her being six years cancer-free after her lumpectomy plus chemo plus radiation treatment, this new knowledge of her increased risk due to her genetic mutations were calling her to do what many women consider but cannot do: she underwent a prophylactic bilateral mastectomy with reconstruction. She did not get the full-page People Magazine spread that Angelina Jolie got for her similar decision nor that of Christina Applegate who also did the same. She didn’t do this for accolades or advocacy. She was just tired of looking over her shoulder every 6 months between mammograms and MRI’s and decided she wanted to do what she was empowered to do regarding her own health. Denise consulted all her specialists and they together concluded her best treatment was to reduce risks. Denise is now not only a breast cancer ‘survivor’ but also a ‘previvor’. I now know what this means.
As we recognize this week and appreciate all the people we know touched by breast and ovarian cancer (whether it is hereditary or not, you all know how many people you know), I think it’s important to recognize that while many will not actually have a genetic link that will increase their cancer risk, the important thing ultimately is to know your family history as best you can. You don’t get to pick your family. You don’t get to pick your genes but knowledge of them can be most beneficial as your make your way through the health challenges you personally may face in your journey. Knowledge is being forewarned and armed and gives you options you may not know you have.
There are many great organizations and resources for understanding the impact of hereditary cancer risks. FORCE (Facing Our Risk of Cancer Empowered) is one of many dedicated to helping individuals and families understand the information and resources available. See www.facingourrisk.org (link to site)
Tags: BRAC1, BRAC2, HBOC, hereditary breast cancer, mastectomy