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Every Story Matters

May 20, 2013

Since Angelina Jolie recently shared her personal experience with genetic testing and prophylactic surgery in the New York Times, public awareness of hereditary cancer is at an all-time high. The media surrounding Ms. Jolie’s revelations has also provided unparalleled opportunities for members of the HBOC community to share their personal accounts as well.

How did you learn about hereditary cancer? Was it a chance meeting with someone who was high risk? A brochure? A TV health show? For me, it was a magazine article I read back in 1997. When I was diagnosed with breast cancer at age 33, my doctors recommended a single mastectomy on one side, but they never told me about genetic counseling or testing, despite my having several red flags for a hereditary syndrome: young onset breast cancer, Jewish background, and a paternal grandmother who died young of abdominal cancer. I certainly would have made different surgical choices if I had known I carried a mutation. The article motivated me to pursue genetic counseling and testing, and ultimately, I chose prophylactic surgery, which discovered early cancer in my healthy breast.

All of our stories are important. Each story we share and every article about HBOC raises awareness and provides an opportunity for someone to recognize himself or herself in the writing and to pursue genetic counseling, testing, and risk-management options.

In a brilliant example of how awareness can save lives, reporter Stacey Sager first shared her hereditary cancer story on WABC-TV in New York in October 2011. Stacey was on a campaign to raise awareness and save lives. A 13-year breast cancer survivor at the time, Stacey had undergone testing for BRCA and found that she carried a BRCA1 mutation. Testing and BSO saved her life. As Stacey bravely allowed cameras to document her BSO, early precancerous changes were found in her fallopian tubes. (Ovarian cancer is rarely found early, other than during prophylactic surgery.) When Stacey wrote a guest blog for Thoughts from FORCE, a reader responded with the following comment, “For years my doctors have been trying to get me to take the BRCA testing because of my family cancer history, but I simply was not ready. After watching your televised story I went to the doctor the next week for my BRCA test.”

Stacey’s story resonated with and motivated more than one person. Celebrity singer/songwriter Kara DioGuardi happened to catch Stacey’s story while in New York City while she was appearing in the Broadway production of Chicago. Kara, who was interviewed by People magazine, shared that a chance viewing of Stacey’s story changed her life. Kara knew about her family history of cancer, but she didn’t know about BRCA testing until that crystalizing moment. When she returned to L.A., she immediately sought care for genetic testing, and then underwent BSO. A dear friend who agreed to be a surrogate for Kara and her husband was implanted with Kara’s last remaining embryo from prior IVF and carried their baby to term; little Greyson is now 3 months old. Kara shares more of her story in a moving interview where she gets to meet Stacey in person and thanks her for publicly sharing her story and possibly saving her life.

Experts estimate that less than 10% of the almost 1 million people in the United States with a mutation are aware of their high-risk status. We know that risk assessment and intervention can improve survival for high-risk individuals. But people cannot take action if they are unaware of their risk. It is up to us to raise the profile of HBOC until every person has access to the tools, information, and health care experts to assess their risk, and every high-risk person has the education, support, and resources they need to make informed decisions about their risk.

In her Voices of FORCE account for our Joining FORCEs newsletter, member Lita Poehlman shared how a chance meeting with a FORCE member led her to genetic counseling and testing, and subsequent prophylactic surgery discovered precancerous changes. She credits that chance meeting with saving her life. These personal anecdotes remind us that every act of sharing is significant and every story matters!

Other publications share accounts from the HBOC community, including several  memoirs: Previvors, Pretty Is What Changes, What We Have, Apron Strings, Beyond the Pink Moon, and Pink Moon Lovelies. The documentary In the Family (which is available for free viewing online until May 26) follows the intimate story of filmmaker Joanna Rudnick and several families facing hereditary cancer. Our community blog page has links to the HBOC  blogosphere, and the Voices of FORCE section of the website is filled with your stories. You can add your story and voice to our pages. Writing and sharing your accounts raises awareness about the impact that hereditary cancer has on everyday people, inspires others to learn more, engenders compassion and understanding for our community, and saves lives.

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4 Comments

  1. i just became a ovarian cancer survivor. Iam 29years old. And i have to small kids under the age of 8. And iam always trying to bring awareness to this. I know I survived to teach others about this. Thanks for what u do. Keep up the great work

  2. Dm says:

    Shared! I would also recommend Gessen’s “Blood Matters”, it really changed my mind.

  3. HBOC is real and important, but brca only explains at most half of it. While it’s hard finding out you have a BRCA mutation, it’s also hard being negative when you know there is something explaining your cancer. The kras-variant is a new validated genetic marker for hboc, please raise awareness!

  4. Debbie Mink says:

    I feel that I am starting to breathe normally again. Sometimes when things happen to us when we are young we move forward quickly and don’t take the time to reflect. I was 29 years old when I was diagnosed for the first time with breast cancer. I had a lumpectomy and 6 weeks of radiation and then my husband and I adopted a baby girl. Fast forward to 2010. In September 2010 I was diagnosed for the second time with breast cancer. Over the course of 15 years I asked a few doctors should I be tested for the BRCA gene and all of them responded that it was not necessary in my situation. Prior to having surgery in October 2010 I asked to be tested again with the understanding that I would have the results before my surgery date. Someone or several people made the mistake when I had all my pre-op lab work done never to give me the BRCA test. I asked the surgeon for my test results and he admitted it was not done. I went through having a right masectomy and then had the BRCA test which showed that I was positive BRCA 1 and 2. I had my sister and brother tested and they tested positive BRCA 1. Going back to September 1984 when I was first diagnosed and making the decision with my husband that when I completed my surgery and radiation we would have a family by adoption. We adopted three children and then were surprised with a biological child. In 2011 we had our biological daughter tested and she tested positive BRCA 2. Fast forwarding to January 2013. My daughter had to make the difficult decisions of either being closely monitored because of her very high risk in developing breast cancer or to undergo a bilateral masectomy. She decided on the latter and had the surgery on March 18th and then had her final reconstructive surgery on June 20th. Her recovery has been difficult but she feels she made the right decision for herself. My brother and sister will test their children in their early twenties like I did because knowledge is empowering. My message to anyone who is concerned about carrying the gene, get tested even if you do not get support from doctors. More people today are aware that preventative testing and early intervention is the path to a healthy life. Unfortunately there are still doctors who have blinders on when listening to patients. We all have to be our own advocates to ensure we have all the facts and understand all of the choices available to us.

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