ArtsAutosBooksBusinessEducationEntertainmentFamilyFashionFoodGamesGenderHealthHolidaysHomeHubPagesPersonal FinancePetsPoliticsReligionSportsTechnologyTravel

BRCA: A previvor's story, from discovery to empowerment

Updated on August 27, 2011
Source

What is a previvor?

A previvor is a survivor of a predisposition to cancer.  The term differs from those already diagnosed with cancer.  Previvor was coined in 2000 after a FORCE (Facing Our Risk Cancer Empowered) member felt that she “needed a label.”

In 2007, Time magazine declared the term #3 on their list of top 10 buzzwords of the year.  Congress passed a resolution declaring September 29, 2010, Previvor Day.  This resolution recognized the unique challenges faced by women and men at high risk for cancer.  (www.facingourrisk.org)

A discovery

In 2009, I was told that my father tested positive for the BRCA (Breast Cancer) gene mutation and it was suggested by his oncologist that I be tested for the gene mutation.

I had never heard of the BRCA gene mutation before.  My father had non-Hodgkin’s lymphoma, I wondered why was he tested for the BRCA gene mutation.  My aunt, my father’s sister had breast cancer and had tested positive for the BRCA gene mutation.  Because of the family history, this put my father at risk. The doctor recommended that he get tested to know if there would be a risk to his children. Statistically, because my father had the mutation, I had a 50% chance of having the BRCA mutation.

For many months, I vacillated on whether I wanted to get tested and find out the results.

Finding out my results

I decided to go speak with a genetic counselor to better educate myself on BRCA. I found out that if I tested positive for BRCA1 I had a 50 to 85% risk of developing breast cancer by age 70 and on top of that, a 40-60% risk of developing ovarian cancer by age 85. A month later, I decided that it was best for me to take the test. I remember returning to the genetic clinic to get my results and the counselor calling my name with a warm smile on her face. I misread her greeting as conveying that everything was okay, but it was not. We sat down and she said, “We got your results, and you tested positive for BRCA1.” In that instant, my life was forever changed.

She spoke for the next 2 hours about family history, statistics, genetics, treatment options, and I don’t think I heard a thing she said. I only remember what she discussed, because she gave me a copy of what she spoke about. I called a friend and my step-dad after and said, “The test came back positive. I am fine. I think mom is taking this much worse than I am.” The fact of the matter was, I was not fine, but in shock and it really hadn’t sunk in yet.

None of it really did until I went to see a breast specialist and geneticist/gynecologist, who both specialize in seeing patients with BRCA. The wake-up call came when the gynecologist told me within the first 10 minutes of my appointment, “We need to discuss the removal of your ovaries.” I was completely caught off guard and shocked by his bold and unvarnished statement.

Source

Doing my research

After my doctors’ appointments, I immersed myself into learning all that I could about the BRCA mutation. I did research online, read books and watched a moving documentary.

“Previvors” by Dina Roth Port is stories of five women living with the BRCA mutation and the choices they make. It is very informative, discussing risks, getting tested, making decisions about whether or not to get surgery and the controversy surrounding the BRCA mutation. It even discusses the advances in prophylactic surgery and breast reconstruction, body image and having a positive future.

A personal journey is written in “Pretty is What Changes: Tough Choices, the breast cancer gene, and learning how to live in the DNA age” by Jessica Queller. It is a first-hand account of a young woman living with the knowledge of having the BRCA mutation and how it affects her life, her family and how she ultimately makes her life-changing decisions.

“In the Family” by Joanna Rudnick is a documentary that shows Joanna’s personal journey after she has discovered that she has the mutation. It is both insightful and informative. There are interviews with doctors, behind the scenes at her appointments and the effect that it has on her personal relationship. Even more profound are the times she spends with breast cancer survivors. She is a support for these women, as well as a student, as she hears firsthand what it has been like for these women to live with cancer. A very moving piece is the trip that she takes with a family to a genetic clinic, as three sisters find out if they have the genetic mutation.

I highly recommend both books and Joanna Rudnick’s documentary. All are very personal and informative.

Finding FORCE and my empowered self

A few months after my research, I attended the FORCE conference in 2010. This meeting helped me to move forward and provided me hope and truly empowered me. I gained a wealth of knowledge about BRCA and joined the close-knit sisterhood of women with BRCA. We laughed and we cried together.

But through it all, I discovered myself, my depth of strength and my ability to try to not take life too seriously; it only makes things more difficult.  BRCA cannot overcome me; I am empowered. 

Comments

    0 of 8192 characters used
    Post Comment

    • profile image

      naturalsolutions 

      6 years ago

      I'm hear to support the pink ribbon organization aka breast cancer fighter.

      Cool hub;) nice job.

    • profile image

      Karen Kramer 

      6 years ago

      Hello Justsayom,

      I would love to email you. I too am BRCA1 positive and am working to help FORCE with marketing. Your blog is wonderful and we would like to include you on our blog roll on our Community page. How can I email you? Please reach me at karenk@facingourrisk.org I look forward to talking to you. Best, Karen

      Thanks so much, Karen

    • justsayom profile imageAUTHOR

      justsayom 

      6 years ago from United States

      Good luck with your surgery. Thanks for reading. Blogging can be very cathartic.

    • profile image

      Sarah 

      6 years ago

      Thank you for sharing. I'm also a Previvor. Started a blog and will have my ovaries and uterus out 9/23.

      http://lildudev.blogspot.com/

    • profile image

      drew "smilely" horn 

      6 years ago

      u r absolutely brilliant....................u'r dedication 2 researching the facts and facing whatever fears u have is an example 4 all 2 follow !!...............big hugs..............drew

    • profile image

      gayle20 

      6 years ago

      Wow...lots of great information. You are brave to share with others.

    • profile image

      Bklyn 

      6 years ago

      Thank you for sharing your very personal story.

    working

    This website uses cookies

    As a user in the EEA, your approval is needed on a few things. To provide a better website experience, hubpages.com uses cookies (and other similar technologies) and may collect, process, and share personal data. Please choose which areas of our service you consent to our doing so.

    For more information on managing or withdrawing consents and how we handle data, visit our Privacy Policy at: https://hubpages.com/privacy-policy#gdpr

    Show Details
    Necessary
    HubPages Device IDThis is used to identify particular browsers or devices when the access the service, and is used for security reasons.
    LoginThis is necessary to sign in to the HubPages Service.
    Google RecaptchaThis is used to prevent bots and spam. (Privacy Policy)
    AkismetThis is used to detect comment spam. (Privacy Policy)
    HubPages Google AnalyticsThis is used to provide data on traffic to our website, all personally identifyable data is anonymized. (Privacy Policy)
    HubPages Traffic PixelThis is used to collect data on traffic to articles and other pages on our site. Unless you are signed in to a HubPages account, all personally identifiable information is anonymized.
    Amazon Web ServicesThis is a cloud services platform that we used to host our service. (Privacy Policy)
    CloudflareThis is a cloud CDN service that we use to efficiently deliver files required for our service to operate such as javascript, cascading style sheets, images, and videos. (Privacy Policy)
    Google Hosted LibrariesJavascript software libraries such as jQuery are loaded at endpoints on the googleapis.com or gstatic.com domains, for performance and efficiency reasons. (Privacy Policy)
    Features
    Google Custom SearchThis is feature allows you to search the site. (Privacy Policy)
    Google MapsSome articles have Google Maps embedded in them. (Privacy Policy)
    Google ChartsThis is used to display charts and graphs on articles and the author center. (Privacy Policy)
    Google AdSense Host APIThis service allows you to sign up for or associate a Google AdSense account with HubPages, so that you can earn money from ads on your articles. No data is shared unless you engage with this feature. (Privacy Policy)
    Google YouTubeSome articles have YouTube videos embedded in them. (Privacy Policy)
    VimeoSome articles have Vimeo videos embedded in them. (Privacy Policy)
    PaypalThis is used for a registered author who enrolls in the HubPages Earnings program and requests to be paid via PayPal. No data is shared with Paypal unless you engage with this feature. (Privacy Policy)
    Facebook LoginYou can use this to streamline signing up for, or signing in to your Hubpages account. No data is shared with Facebook unless you engage with this feature. (Privacy Policy)
    MavenThis supports the Maven widget and search functionality. (Privacy Policy)
    Marketing
    Google AdSenseThis is an ad network. (Privacy Policy)
    Google DoubleClickGoogle provides ad serving technology and runs an ad network. (Privacy Policy)
    Index ExchangeThis is an ad network. (Privacy Policy)
    SovrnThis is an ad network. (Privacy Policy)
    Facebook AdsThis is an ad network. (Privacy Policy)
    Amazon Unified Ad MarketplaceThis is an ad network. (Privacy Policy)
    AppNexusThis is an ad network. (Privacy Policy)
    OpenxThis is an ad network. (Privacy Policy)
    Rubicon ProjectThis is an ad network. (Privacy Policy)
    TripleLiftThis is an ad network. (Privacy Policy)
    Say MediaWe partner with Say Media to deliver ad campaigns on our sites. (Privacy Policy)
    Remarketing PixelsWe may use remarketing pixels from advertising networks such as Google AdWords, Bing Ads, and Facebook in order to advertise the HubPages Service to people that have visited our sites.
    Conversion Tracking PixelsWe may use conversion tracking pixels from advertising networks such as Google AdWords, Bing Ads, and Facebook in order to identify when an advertisement has successfully resulted in the desired action, such as signing up for the HubPages Service or publishing an article on the HubPages Service.
    Statistics
    Author Google AnalyticsThis is used to provide traffic data and reports to the authors of articles on the HubPages Service. (Privacy Policy)
    ComscoreComScore is a media measurement and analytics company providing marketing data and analytics to enterprises, media and advertising agencies, and publishers. Non-consent will result in ComScore only processing obfuscated personal data. (Privacy Policy)
    Amazon Tracking PixelSome articles display amazon products as part of the Amazon Affiliate program, this pixel provides traffic statistics for those products (Privacy Policy)