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Angelina Jolie Pitt's Story Highlights BRCA Testing and Personal Health Decisions

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April 9, 2015

In follow up to a previous double mastectomy aimed at preventing the development of breast cancer, actress and humanitarian Angelina Jolie Pitt announced in a recent New York Times column that she decided to have another surgery to remove her ovaries and fallopian tubes to decrease her risk of ovarian cancer. That risk is based on Jolie Pitt having inherited mutations in BRCA genes.

BRCA1 and BRCA2 genes are normally cancer suppressors—they produce proteins that help prevent abnormal cell growth. Mutations in these genes can affect their function and actually allow cancer cells to go into overdrive. This increases the risk of cancer for people who inherit the mutations.

Jolie Pitt also announced her previous surgery, the double mastectomy, in a New York Times Op-Ed article two years ago. Both columns have increased awareness and attention about BRCA genetic mutations and the opportunity for women to have BRCA testing to find out if they carry the mutations.

While advances in genetics and testing technology have led to tests such as BRCA that can report increased risk of developing serious and fatal diseases—called predictive testing—the information about and provided by the tests can be confusing. People react differently to being told they are at increased risk for an illness and might not fully understand the basis for the report or the implications of the results.

Here are some key things to know about BRCA1 and BRCA2 gene mutations and testing:

  • The majority of breast and ovarian cancers are not linked to BRCA. Only about 5-10% of breast cancer patients and about 15% of ovarian cancer patients have a harmful mutation in BRCA1 or BRCA2 genes.
  • Only 0.2% of the population carry BRCA mutations. Therefore, testing is not recommended for everyone, only for those with a strong family history of breast or ovarian cancer or a relative known to have a BRCA mutation.
  • The U.S. Preventive Services Task Force recommends that women who have family members with breast, ovarian, tubal, or peritoneal cancer be assessed using a series of questions. Women who are found to have a family history that may be associated with BRCA1 or BRCA2 mutations should receive genetic counseling and subsequent BRCA testing, if indicated.
  • Having the mutation does not necessarily mean cancer will develop, but it does increase risk: women with inherited mutations in BRCA1 or BRCA2 have up to an 85% lifetime risk of developing breast cancer and a 30-50% lifetime risk of developing ovarian cancer. That risk drops considerably, but not completely, following surgery.

Decisions about actions to take and treatments in follow up to a positive test are very individual ones and there is no one right answer. Options range from closer monitoring for breast or ovarian cancer to surgeries like Jolie Pitt's, and women are urged to discuss all their questions and concerns with a genetic counselor as well as with their own healthcare provider.

In fact, cancer experts say the importance of pre- and post-test consultation with a genetic counselor cannot be overstated. There are many issues to be considered when deciding about a genetic test and upon learning the results, and a genetic counselor has the knowledge and expertise to help sort through them.

In her most recent Times Op-Ed, Jolie Pitt wrote, "I did not [have surgery] solely because I carry the BRCA1 gene mutation, and I want other women to hear this. A positive BRCA test does not mean a leap to surgery. I have spoken to many doctors, surgeons and naturopaths. There are other options…" Added Jolie Pitt, "There is more than one way to deal with any health issue. The most important thing is to learn about the options and choose what is right for you personally."

In follow up, leaders from two national ovarian cancer organizations wrote in a letter to the editor: "Most women don't learn about ovarian cancer until they — or a loved one — receive a diagnosis. We are grateful to Ms. Jolie Pitt for sharing her personal story and encouraging women to learn their risk." They added, "Our hope is that the second chapter of Ms. Jolie Pitt's story will spur even more women to examine their family health history, speak with genetic counselors and get the facts about ovarian cancer."

When considering predictive genetic testing, questions to ask a genetic counselor or other health practitioner might include:

  • Am I in the group at risk and should I get tested?
  • If I decide to get tested, what do the results mean?
  • What are my treatment options based on results?
  • How do I decide on treatment?

For resources and background information, read Making Informed Decisions for Better Health.

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NOTE: This article is based on research that utilizes the sources cited here as well as the collective experience of the Lab Tests Online Editorial Review Board. This article is periodically reviewed by the Editorial Board and may be updated as a result of the review. Any new sources cited will be added to the list and distinguished from the original sources used. To access online sources, copy and paste the URL into your browser.

(March 24, 2015) Angelina Jolie Pitt: Diary of a Surgery. New York Times, The Opinion Pages. Available online through http://www.nytimes.com. Accessed March 31, 2015.

(April 11, 2013) National Cancer Institute. Genetic Testing for Hereditary Cancer Syndromes. Available online at http://www.cancer.gov/cancertopics/genetics/genetic-testing-fact-sheet through http://www.cancer.gov. Accessed March 31, 2015.

(September 3, 2014) Chustecka, Zosia. Angelina Jolie Effect: BRCA Testing Doubles. Medscape News. Available online at http://www.medscape.com/viewarticle/831010 through http://www.medscape.com. Accessed March 31, 2015.

(March 24, 2015) Catalanello, Rebecca. In honor of Angelina Jolie: 5 things to know about genetic testing for breast and ovarian cancer. Times-Picayune. Available online at http://www.nola.com/health/index.ssf/2015/03/angelina_jolie_5_things_to_kno.html through http://www.nola.com. Accessed March 31, 2015.

(December 24, 2013) US Preventive Services Task Force. Final Recommendation Statement BRCA-Related Cancer: Risk Assessment, Genetic Counseling, and Genetic Testing. Available online through http://www.uspreventiveservicestaskforce.org. Accessed March 31, 2015.

(March30, 2015) Balas, Calaneet and Moran, Audra. To the Editor: Re "Diary of a Surgery" (Op-Ed, March 24). Available online at http://www.nytimes.com/2015/03/30/opinion/ovarian-cancer-learning-the-risks.html?ref=opinion&_r=1 through http://www.nytimes.com. Accessed March 31, 2015.