Where to Turn after Receiving Positive Genetic Test Results

So you tested positive for BRCA, Now What? A Starting List of Resources for Patients who Test Positive for BRCA

Source: Dan L. Duncan Comprehensive Cancer Center

Two and a half years ago I decided to undergo genetic testing to determine if I (along with my mother and her sister) was positive for the BRCA2 genetic mutation. I quickly learned from my own health care journey — as well as by conducting research with patients who are BRCA-positive — that it is not enough to simply decide to undergo genetic testing for hereditary breast and ovarian cancer (HBOC). This is just one of the steps.

Indeed, a BRCA-positive patient’s health care journey starts when exploring one’s family history of cancer, and then continues to receiving the genetic test results (positive or negative), and then coming to terms one’s high genetic cancer risk, and then, finding healthcare providers who are knowledgeable about BRCA and can assist in making health decisions that are personalized to one’s unique situation and individual preferences.

Source: Presentation at the 5th Annual Houston HBOC Conference

This was the topic of my presentation at the 5th Annual Houston Area Hereditary Breast and Ovarian Cancer Conference this past weekend.

My presentation was entitled, “So you tested positive for BRCA, now what? Learning from previvors’ healthcare experiences to navigate one’s own health journey.”

The purpose of this conference was to raise awareness about cancer risks and prevention options for BRCA-positive individuals as well as their family members.

In my presentation, I described my own health care journey into the world of HBOC (or my journey thus far), presented results from a couple research studies I am currently conducting with BRCA-positive patients, and finally, shared a few practical tips to help conference attendees navigate their own health care journeys.

In an effort to continually translate my research into practice — thus reducing the gap between my role as a professor and a patient — below is a list of resources I shared with conference attendees.

The target audience for this list includes individuals who have tested positive for BRCA but have not been diagnosed with HBOC as well as patients who have been diagnosed with HBOC. It is my hope that these resources may help patients process their diagnoses, navigate their own health care journeys, and ultimately assist in making personal health decisions.

22 Must-Read Books on HBOC and BRCA

  1. Pretty Is What Changes: Impossible Choices, the Breast Cancer Gene, and How I Defied My Destiny by Jessica Queller
  2. Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions by Dina Roth Port
  3. Confronting Hereditary Breast and Ovarian Cancer: Identify Your Risk, Understand Your Options, Change Your Destiny by Sue Friedman, Rebecca Sutphen, & Kathy Steligo
  4. Beyond the Pink Moon: A Memoir of Legacy, Loss and Survival by Nicki Durlester
  5. Eating the Underworld by Doris Brett

6. What We Have: A Family’s Inspiring Story About Love, Loss, and Survival by Amy Boesky

7. Cancer Time Bomb: How the BRCA Gene Stole My Tits and Eggs by Joelle B. Burnette

8. Apron Strings: Inheriting Courage, Wisdom And… Breast Cancer by Diane Tropea Greene

9. Eating Pomegranates: A Memoir of Mothers, Daughters, and the BRCA Gene by Sarah Gabriel

10. Leaving Long Island by Fern Kupfer

11. Letters to Doctors: Patients Educating Medical Professionals through Practical True-Life Experiences by Dr. Jonathan Herman and Teri Smieja

12. Annie Parker Decoded: The Story that Inspired the Film by Anne Parker

13. Positive Results: Making the Best Decisions When You’re at High Risk for Breast or Ovarian Cancer by Joi Morris, Ora Gordon, Selma Schimmel

14. Now What? A Patient’s Guide to Recovery after Mastectomy by Amy Curran Baker

15. Waiting for Cancer to Come: Women’s Experiences with Genetic Testing and Medical Decision Making for Breast and Ovarian Cancer by Sharlene Hesse-Biber

16. I’m Still Standing by Wendy Watson

17. The Breast Reconstruction Guidebook: Issues and Answers from Research to Recovery by Kathy Steligo

18. Pieces of Me by Veronica Neave

19. The Decision Tree: How to Make Better Choices and Take Control of Your Health by Thomas Goetz

20. Hurdles — When Cancer Strikes a Family by Michael C. Kesle

21. The Pink Moon Lovelies: Empowering Stories of Survival by Nicki Boscia Durlester (with stories from many others)

22. Blood Matters: From BRCA1 to Designer Babies, How the World and I Found Ourselves in the Future of the Gene by Masha Gessen

4 Must-See Films about HBOC and BRCA

Decoding Annie Parker
In The Family by Joanna Rudnick
The Mutant Diaries: Unzipping My Genes by Eva Moon
Pink & Blue by Alan M. Blassberg and Amy Byer Shainman

16 Must-Visit Blogs/Websites about HBOC and BRCA

  1. Brave Bosom by Andrea Downing
  2. Saying NOPE to Breast Cancer by Anonymous
  3. Being BRCA Positive by Jill Oster
  4. BRCA According to Me by Megan Hartman
  5. BRCA What by Mandy Carpenter
  6. Breaking BRCA by Jessica Shaw
  7. Blogging BRCA in Real Time by BSF
  8. Elevated Risk by Linda Grier
  9. Ticking Time Bomb by Rachel Horn
  10. Marathon B4 Mastectomy by Lisa Talusan
  11. The BRCA Responder by Amy Byer Shainman
  12. BRCA Sisterhood founded by Karen Malkin-Lazarovitz & Teri Smieja
  13. My Gene Counsel founded by Ellen Matloff
  14. I Have Lynch Syndrome founded by Georgia Hurst
  15. Bright Pink founded by Lisa Avner
  16. Facing Our Risk of Cancer Empowered (FORCE) founded by Sue Friedman

5 International Websites/Groups about HBOC and BRCA

  1. BRCA Umbrella (UK)
  2. Evita (Portugal)
  3. BRCA — Netzwerk e.V. (Germany)
  4. Bracha (Israel)
  5. BRCA (France)

*Disclaimer: This list is not meant to be a comprehensive list of all resources for HBOC and BRCA, merely a starting list. For more information, visit The BRCA Responder’s Collection of BRCA/Hereditary Cancer Books & Movies here.

Call to Action

If you found this article helpful, please subscribe to my cancer communication website. Additionally, share this article on social media, so we can make sure no patient deals with HBOC or positive BRCA genetic test results alone.

Dr. Marleah Dean Kruzel (PhD, Texas A&M University) is an Assistant Professor in Health Communication at the University of South Florida. She studies patient-provider and family communication about hereditary breast and ovarian cancer. A BRCA2-positive patient herself, Marleah is committed to translating her research into practice, which is why she volunteers as an Outreach Group Leader for Facing Our Risk of Cancer Empowered (FORCE) and maintains a blog called “The Patient and The Professor.” For more information, visit her website: www.cancercommunicationresearch.com. You can also follow her on Facebook and Twitter.