Narratives ~ Psychosocial
~ Genetics of Breast & Ovarian Cancer

Narrative experiences from individuals affected in various capacities by HBOC

List was last updated on Oct 20, 2019 @ 1:56 pm.


    • "How do we rally around the one who was positive?" Familial uncertainty management in the context of men managing BRCA-related cancer risks.
    • Rauscher EA, Dean M, Campbell-Salome G, Barbour JB.
    • Soc Sci Med. 2019 Oct 11;242:112592. doi: 10.1016/j.socscimed.2019.112592. [Epub ahead of print]
    • A young woman's story of genetic testing and risk-reducing mastectomy.
    • [No author given]
    • FORCE. XRAYS. 2019 Jun 6.

    Narrative: I Had a Preventive Mastectomy—Then Found Out I Already Had Breast Cancer. (Health)

    • Breast cancer stalked every woman in her family. She was determined it wouldn’t get her.
    • Reyes-Velarde A.
    • Los Angeles Times. Column One. 2019 Apr 25.

    Press: Behind the story: For a daughter of immigrants, a story stirs up memories of her own family. (Los Angeles Times)

    • "It felt like unfinished business, it feels like that's finished now": Women's experiences of decision making around Contralateral Prophylactic Mastectomy (CPM).
    • Tollow P, Williams VS, Harcourt D, Paraskeva N.
    • Psychooncology. 2019 Apr 8. doi: 10.1002/pon.5086. [Epub ahead of print]
    • Men's and Women's Approaches to Disclosure About BRCA-Related Cancer Risks and Family Planning Decision-Making.
    • Dean M, Rauscher EA.
    • Qual Health Res. 2018 Dec;28(14):2155-2168. doi: 10.1177/1049732318788377. Epub 2018 Jul 27.
    • Pricey Precision Medicine Often Financially Toxic For Cancer Patients.
    • Szabo L.
    • Kaiser Health News. 2018 Nov 1.

    Research News: The cost of cancer care and impact of financial hardship on treatment. (FORCE XRAYS)

    • My Father’s Fight Against the Breast-Cancer Gene.
    • Munster P.
    • The Wall Street Journal. The Saturday Essay. 2018 Sep 28.

    Blog post: Pamela Munster's story: Cancer in the family (FORCE. XRAYS.)

    • Our CEO Interviews Author of “Mom’s Genes”, for Kids.
    • [No author given]
    • My Gene Counsel. 2018 Sep 26.
    • Twisting Fate. My Journey with BRCA—from Breast Cancer Doctor to Patient and Back
    • Pamela Munster
    • The Experiment (publisher). 2018 Sep 25. ISBN 978-1-61519-478-0. 272 pages. Hardcover, Ebook.
    • Book

    Essay: My Father’s Fight Against the Breast-Cancer Gene. (The Wall Street Journal.)

    • Cancer experience in families affects decision making.
    • [No author given]
    • FORCE. XRAYS. 2018 Sep 25.

    Press: How a Loved One’s Experience With Cancer Guides Breast Cancer Decisions. (U.S. News & World Report)

    • Previvor: An Oncology Nurse's Story of Cancer Risk Reduction Through Genetic Testing.
    • Kelly J.
    • Clin J Oncol Nurs. 2018 Jun 1;22(3):247-248. doi: 10.1188/18.CJON.247-248.
    • Editorial / Commentary
    • Juliet's story: No reconstruction is a post-mastectomy option.
    • [No author given]
    • FORCE. XRAYS. 2018 May 24.

    Blog post: I felt empowered by choosing not to have a reconstruction. (Breast Cancer Care)

    • Take your time, follow your heart: strategies for communication about family planning.
    • [No author given]
    • FORCE. XRAYS. 2018 Mar 28.

    "Take your time, then follow your heart:" Previvors' advice for communicating about family planning after testing positive for a BRCA genetic variant.

    • The Right Not to Know: When Ignorance Is Bliss but Deadly.
    • Clausen AM.
    • Global Health NOW. 2018 Mar 20.

    Commentary: The right not to know when not knowing is dangerous. (FORCE. XRAYS.)

    • When BRCA Mutations Meet Complications.
    • Clausen AM.
    • Global Health NOW. 2018 Mar 20.
    • "Take your time, then follow your heart:" Previvors' advice for communicating about family planning after testing positive for a BRCA genetic variant.
    • Rauscher EA, Dean M.
    • Fam Syst Health. 2017 Dec;35(4):486-497. doi: 10.1037/fsh0000312.

    Research news: Take your time, follow your heart: strategies for communication about family planning. (FORCE. XRAYS.)

    • VUS Reclassified to "Suspected Deleterious": When Genetic Counseling Updates Become Life-Saving.
    • [No author given]
    • My Gene Counsel. 2017 Nov 30.
    • The power of shared experience: Empowering women to face their cancer risk.
    • Caitlin Lopez
    • NSGC blog, 2017 Aug 30.
    • "The Absence Doubled?" Photo-Poetic Narratives of Prophylactic Mastectomy.
    • Bolaki S.
    • Lit Med. [2017 Spring;]35(1):1-26. doi: 10.1353/lm.2017.0000.
    • Commentary
    • Beyond BRCA: Hereditary Diffuse Gastric Cancer Syndrome and CDH1 Mutations.
    • [No author given]
    • My Gene Counsel. 2016 Nov 22.
    • Joanna Rudnick, Filmmaker of BRCA Previvor "In the Family" Documentary.
    • [No author given]
    • My Gene Counsel. 2016 Sep 29.
    • Celebrities Share Cancer Stories Part 1.
    • [No author given]
    • My Gene Counsel. 2016 Sep 27.
    • Why I Won’t Get the Genetic Test for Breast Cancer.
    • Cynthia Graber.
    • Wired. Science. 2016 Sep 27.

    News: Genetic testing has become more affordable and available. Should you get it? (FORCE)

    • Sue Friedman, Founder of FORCE, Shares
    • Sue Friedman
    • My Gene Counsel. 2016 Sep 21.
    • Waiting for Cancer
    • Patricia Fall.
    • Well. NY Times. 2016 Sep 1.
    • Pandora’s DNA: Tracing the Breast Cancer Genes Through History, Science, and One Family Tree
    • Robertson C.
    • Book Review, Perspectives in Genetic Counseling, Volume 38, Number 3, p. 16. 2016 Qtr 3.
    • Prophylactic mastectomy: insights from women who chose to reduce their risk by Andrea Farkas Patenaude, PhD Praeger 2012. 227 ps. ISBN: 0313345163.
    • Lisa R. Rubin, Kailey Roberts.
    • Psycho-Oncology. 25(6):747-8. doi: 10.1002/pon.4152. 2016 Jun.
    • Book review
    • Podcast: Don't Allow The Wrong Genetic Test To Be Ordered For Your Family.
    • Ellen T. Matloff.
    • My Gene Counsel. 2016 Apr 26.
    • Beyond BRCA: CHEK2.
    • [No author given]
    • My Gene Counsel. 2016 Apr 21.
    • Bad Luck Or Bad Genes? Dealing With BRCA And 'A Cancer In The Family'.
    • Terry Gross, Theodora Ross.
    • NPR. Fresh Air. Health. 2016 Mar 14.
    • Podcast: Making Prophylactic Surgery Decisions.
    • Ellen T. Matloff.
    • My Gene Counsel. 2016 Feb 24.
    • Beyond BRCA: Testing negative and living in the 'gray zone' for cancer risk.
    • [No author given]
    • My Gene Counsel. 2016 Feb 16.
    • My legacy to my daughters: BRCA and cancer?
    • Lorrie Goldin.
    • Washington Post. 2016 Jan 25.
    • Sweeping Up after the Kardashians: What We Wish had been Covered in Their Genetic Testing Episode.
    • [No author given]
    • My Gene Counsel. 2016 Jan 22.
    • Journey through the clinics - The experience of a woman with BRCA2.
    • Abernethy K.
    • Post Reprod Health. 2015 Dec;21(4):158-60. doi: 10.1177/2053369115611015.
    • National Caregivers Month: Gabbie & Meaghan’s Story.
    • [No author given].
    • My Gene Counsel. 2015 Nov 19.
    • Recommendations and Reality: What Personal Stories of Hereditary Cancer Can Tell Us.
    • Ridgely Fisk Green, Katrina Trivers.
    • CDC. Genomics and Health Impact Blog. 2015 Jun 1.
    • Podcast: Prophylactic Surgery Decisions Before BRCA Testing.
    • [No author given]
    • My Gene Counsel. 2015 Sep 29.
    • Podcast: Real Men Get Genetic Counseling.
    • [No author given]
    • My Gene Counsel. 2015 Jun 30.
    • Podcast: I Will Survive!
    • Ellen T. Matloff.
    • My Gene Counsel. 2015 Jun 2.
    • Podcast: Genetic Counseling for Survivors.
    • Ellen T. Matloff.
    • My Gene Counsel. 2015 May 26.
    • How Genetic Tests Can Reveal a Hidden Family History of Cancer.
    • [No author given]
    • NBC Nightly News. 2015 May 20.
    • Two Women, Two Results: The Agonizing Wait for Cancer Gene Tests.
    • [No author given]
    • NBC Nightly News. 2015 May 19.
    • A WILD RIDE: A Genetic Counselor Undergoes Genetic Testing.
    • Caroline Lieber.
    • NSGC Blog. 2015 May 13.
    • Lizzie Stark's ‘Real Steps to Survival’
    • Seth Berkman
    • The Sisterhood, 2015 Jan 6
    • From Diagnosis to Gnosis: writing, knowledge, and repair in breast cancer and BRCA memoirs.
    • Boesky A.
    • Perspect Biol Med. 2015;58(1):74-88. doi: 10.1353/pbm.2015.0019.
    • Unknown significance.
    • Couzin-Frankel J.
    • Science. 2014 Dec 5;346(6214):1167-70. doi: 10.1126/science.346.6214.1167.

    Press: Feature: Peering into my genome (Science)

    • THE MUTANT DIARIES: UNZIPPING MY GENES, A musical about telling cancer to take a hike.
    • Deepti Babu.
    • Perspectives in Genetic Counseling 36(4):8-9, 2014 Qtr 4.
    • The loss of a mother and dealing with genetic cancer risk: women who have undergone prophylactic removal of the ovaries.
    • Mæland MK, Eriksen EO, Synnes O.
    • Eur J Oncol Nurs. 2014 Oct;18(5):521-6. doi: 10.1016/j.ejon.2014.04.006. Epub 2014 May 28.
    • Knowing BRCA Changed My Life.
    • Debbie Wasserman Schultz.
    • The Topic Is Cancer, CDC's Division of Cancer Prevention and Control, 2014 Jun 10.
    • Triple-negative inflammatory breast cancer survivor: Facing new questions with genetic testing.
    • Kellie Bramlet.
    • Cancerwise Blog, MD Anderson Cancer Center, 2014 Feb 3.
    • My Cancer Story, My Genes, My Information.
    • Joanna Rudnick.
    • Huffington Post. The Blog. 2013 Nov 19.
    • Before Angelina: Portraits of Breast Cancer Previvors and Survivors.
    • [No author given]
    • Yale Cancer Genetic Counseling. 2013 Nov 1.
    • Before Angelina: Portraits of Breast Cancer Previvors and Survivors.
    • [No author given]
    • Time. Healthland. 2013 Oct 28.
    • Experience of BRCA1/2 mutation-negative young women from families with hereditary breast and ovarian cancer: a qualitative study.
    • Macrae L, de Souza AN, Loiselle CG, Wong N.
    • Hered Cancer Clin Pract. 2013 Oct 16;11(1):14. doi: 10.1186/1897-4287-11-14.
    • A Dispatch from the Genetic Frontier.
    • Theo Bloom.
    • PLOS Biologue. 2013 Sep 24.
    • BRCA Genetic Testing: An RN's Personal Story.
    • Wasserman L.
    • Clin J Oncol Nurs. 2013 Aug 1;17(4):449-50. doi: 10.1188/13.CJON.449-450.
    • My Medical Choice.
    • Angelina Jolie.
    • NY Times. The Opinion Pages. 2013 May 14.
    • Living My Family's Story: Identifying the LivedExperience in Healthy Women at Risk for Hereditary Breast Cancer.
    • Underhill ML, Lally RM, Kiviniemi MT, Murekeyisoni C, Dickerson SS.
    • Cancer Nurs. 2012 Nov;35(6):493-504. doi: 10.1097/NCC.0b013e31824530fa.
    • Grace Rock's consent.
    • Ross TS.
    • Endocr Relat Cancer. 2012 Jul 22;19(4):C29-31. doi: 10.1530/ERC-12-0186. Print 2012 Aug.
    • Living with the BRCA genetic mutation: an uncertain conclusion to an unending process.
    • DiMillo J, Samson A, Thériault A, Lowry S, Corsini L, Verma S, Tomiak E.
    • Psychol Health Med. 2013;18(2):125-34. doi: 10.1080/13548506.2012.687827. Epub 2012 Jun 6.
    • When work, family and friendship collide.
    • Macshane M, Mountain H.
    • J Genet Couns. 2012 Apr;21(2):215-9. Epub 2011 Dec 9.