Angelina Jolie, the Breast and Ovarian Cancer Prevention Link to BRCA1, and Me – Darci

 

 


 A Special Note from Health Power:  

Our recent blog post about Angelina Jolie, Breast and Ovarian Cancer Prevention, BRCA1, and Darci Graves, which was written by Darci, has already received very positive feedback.  It was Darci’s careful research, deep reflection, and courage that led to her decision – after being diagnosed with Stage 1 breast cancer, and BRCAI gene mutation – to have both of her breasts removed, and later, both ovaries as well.                                                                                                                                                                       
  Darci Graves

Darci has also been one of Health Power’s leading Editors for several years as well as a close friend.  For all of the above reasons, plus Darci’s openness and generosity, and Health Power’s commitment to health awareness and health literacy, that we have been pleased to share excerpts from her story. Notes from ‘Darci’s Diary’ have also been shared periodically on our website and in our blog, and will continue to be. So check for them periodically.

Her more detailed diary entries can be found on her website at  www.educatoraspatient

 The Angelina Jolie, Darci Graves, BRCA1 Connection Repeated: 

By Darci Graves

 I, Darci,  don’t typically sit around comparing my life to the lives of celebrities. But over the course of the last two years, Angelina Jolie-Pitt and I have had many of the same experiences, made some of the same decisions, and have chosen to share our health related experiences publicly.

 As I prepared to write this piece, I realized that I had more in common with Angelina than I thought. We were both born in June, 1 year apart, (I will confess to being the older one), we are both Gemini’s, we both love to travel, and we both hope to leave in the world better than we found it.

In addition to the above, Angelina and I are both carriers of the BRCA1 gene mutation. According to Susan G. Komen[i] and the National Cancer Institute[ii], this places us in a relatively small group of women in the United States (see table 1). Angelina and I also share a strong family history of breast and ovarian cancers, which is not surprising given that we carry the BRCA1 mutation. I am fortunate that all of my family members who have been diagnosed are now cancer survivors. By comparison, Angelina has lost her mother, grandmother, an aunt and others to cancer.

 I have to imagine that our knowledge and experiences determined the way we have addressed the disease. Since BRCA1 and BRCA2 are relatively rare conditions, I’m sharing the following table:

 Prevalence of BRCA1 and BRCA2 gene mutations among U.S. women with breast cancer by race/ethnicity (in alphabetical order).

 

BRCA1

BRCA2

African-American

1%

3%

Ashkenazi Jewish

8-10%

1%

Asian-American

Less than 1%

Data not available

Caucasian (non-Ashkenazi Jewish)

2-3%

2%

Hispanic

4%

Data not available

In May of 2013, Angelina announced that she had undergone a preventive double mastectomy (removal of both breasts because of the increased risk of developing breast cancer). In August of 2013, I was diagnosed with stage 1 breast cancer and subsequently underwent my own double mastectomy. I also underwent 5 months of chemotherapy to further reduce the chances of a breast cancer recurrence.

 In August of 2014, I had a surgical procedure called a prophylactic (or preventive) bilateral salpingo-oophorectomy (removal of my ovaries and fallopian tubes in order to greatly reduce my chances of being diagnosed with ovarian cancer. Last week, Angelina announced she had undergone the same procedure for the same basic reason.

 In an effort to help others, demystify the process, and reduce the taboo around the subject of having one’s ovaries removed, Angelina, or Ms. Jolie-Pitt, and I have chosen to share our journeys publicly. She has shared through editorials in the New York Times, and I have been able to share my journey through my personal blog, as well as here at Health Power – www.healthpowerforminorities.com

 We have both been praised for being brave about our medical decisions.  I’m still not sure I feel that I made a ‘brave choice’. Most days, I feel that I made an informed choice and the choice that was right for me. I did a lot of homework in order to come to my decisions. There are individuals out there, who are questioning Angelina’s. I can say from experience, that one does not make any of these choices lightly and without doing a lot of thinking, consulting, and soul-searching.

 By the way, Not everyone with the BRCA1 mutation develops cancer.

 Not everyone with the BRCA1 mutation, who does develop cancer, dies.

 But everyone who has the BRCA1 mutation (or any genetic mutation of that sort) does have homework to do, options to consider, and decisions to make – and those decisions are personal and should be made on a case-by-case basis in consultation with a qualified health care team.

 #KnowYourRisk

 #KnowYourBody

References:

[i]  http://ww5.komen.org/BreastCancer/InheritedGeneticMutations.html

[ii] http://www.cancer.gov/cancertopics/pdq/genetics/breast-and-ovarian/HealthProfessional/page2

 
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