Narrative experiences from individuals affected in various capacities by HBOC
List was last updated on
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- The use of Instagram by gynecologic oncology providers as a patient education tool for patients at high-risk of gynecologic cancer.
- Holtzman S, Carr C, Zeligs K, Blank SV.
- Gynecol Oncol Rep. 2023 Jan 31 [eCollection 2023 Apr];46:101143. doi: 10.1016/j.gore.2023.101143.
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- Exploring the role of a multidisciplinary hereditary gynecologic oncology clinic in epithelial ovarian cancer risk-reducing surgical decision-making practices: A mixed-methods study.
- Casalino S, Bruce S, Serfas K, Altman AD, Kean S, Lambert P, McManus KJ, Hartley JN, Nachtigal MW.
- J Genet Couns. 2023 Feb 20. doi: 10.1002/jgc4.1684. Epub ahead of print.
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- Preventative Surgeries at Age 32 Because of My BRCA1 Gene Mutation.
- Clem E.
- FORCE. Blog. 2023 Feb 13.
- Blog post
- Free Full Text
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- We All Love a Good Book or Movie.
- [No author given]
- FORCE. Blog. 2023 Jan 23.
- Blog post
- Free Full Text
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- Predicting Openness of Communication in Families With Hereditary Breast and Ovarian Cancer Syndrome: Natural Language Processing Analysis.
- Baroutsou V, Cerqueira Gonzalez Pena R, Schweighoffer R, Caiata-Zufferey M, Kim S, Hesse-Biber S, Ciorba FM, Lauer G, Katapodi M; CASCADE Consortium.
- JMIR Form Res. 2023 Jan 19;7:e38399. doi: 10.2196/38399.
- PMID: 36656633
- PubMed abstract
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- Learning about My Mother’s PALB2 Mutation was a Gift to Our Family.
- Smith K.
- FORCE. Blog. 2023 Jan 13.
- Blog post
- Free Full Text
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- Developing theory-driven narrative messages with personal stories: A step-by-step guide.
- Conley CC, Davidson LG, Scherr CL, Dean M.
- Psychooncology. 2022 Oct 7. doi: 10.1002/pon.6047. Epub ahead of print.
- PMID: 36205027
- PubMed abstract
- Source abstract
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- Why I Chose Preventive Mastectomy.
- Swirsky N.
- FORCE. Blog. 2022 Oct 3.
- Blog post
- Free Full Text
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- Getting Past the Shock of a Previvor Diagnosis and Making a Plan.
- Swirsky N.
- FORCE. Blog. 2022 Sep 21.
- Blog post
- Free Full Text
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- How do women who are informed that they are at increased risk of breast cancer appraise their risk? A systematic review of qualitative research.
- Woof VG, Howell A, McWilliams L, Gareth Evans D, French DP.
- Br J Cancer. 2022 Aug 24. doi: 10.1038/s41416-022-01944-x. Epub ahead of print.
- PMID: 36002751
- PubMed abstract
- Review
- Free Full Text
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- JSCREEN and K.I.C.K Partner to Kick Cancer with Genetic Testing.
- Kickel Hernandez K.
- FORCE. Blog. 2022 Aug 16.
- Blog post
- Free Full Text
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- A qualitative reflexive thematic analysis into the experiences of being identified with a BRCA1/2 gene alteration: "So many little, little traumas could have been avoided".
- Warner NZ, Groarke A.
- BMC Health Serv Res. 2022 Aug 6;22(1):1007. doi: 10.1186/s12913-022-08372-w.
- PMID: 35933387
- PubMed abstract
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- Good Genes.
- Demarest K.
- J Clin Oncol. 2022 Aug 3:JCO2200871. doi: 10.1200/JCO.22.00871. Epub ahead of print.
- PMID: 35921607
- PubMed abstract
- Source abstract
- Commentary
- Free Full Text
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- The Communication Chain of Genetic Risk: Analyses of Narrative Data Exploring Proband–Provider and Proband–Family Communication in Hereditary Breast and Ovarian Cancer.
- Pedrazzani C, Aceti M, Schweighoffer R, Kaiser-Grolimund A, Bürki N, Chappuis PO, Graffeo R, Monnerat C, Pagani O, Rabaglio M, Katapodi MC, Caiata-Zufferey M.
- J Pers Med. 2022 Jul 29;12(8):1249. doi: 10.3390/jpm12081249.
- PMID: 36013197
- PubMed abstract
- Source abstract
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- A qualitative study of unaffected ATM and CHEK2 carriers: How participants make meaning of 'moderate risk' genetic results in a population breast cancer screening trial.
- James JE, Riddle L, Caruncho M, Koenig BA, Joseph G.
- J Genet Couns. 2022 Jul 25. doi: 10.1002/jgc4.1617. Epub ahead of print.
- PMID: 35877161
- PubMed abstract
- Source abstract
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- The Clinical and Psychosocial Outcomes for Women Who Received Unexpected Clinically Actionable Germline Information Identified through Research: An Exploratory Sequential Mixed-Methods Comparative Study.
- Forrest LE, Forbes Shepherd R, Tutty E, Pearce A, Campbell I, Devereux L, Trainer AH, James PA, Young MA.
- J Pers Med. 2022 Jul 7;12(7):1112. doi: 10.3390/jpm12071112.
- PMID: 35887609
- PubMed abstract
- Source abstract
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- Perceptions and care Recommendations from Previvors: Qualitative analysis of female BRCA1/2 mutation Carriers' experience with genetic testing and counseling.
- Dibble KE, Donorfio LKM, Britner PA, Bellizzi KM.
- Gynecol Oncol Rep. 2022 May 2 [eCollection 2022 Jun];41:100989. doi: 10.1016/j.gore.2022.100989.
- PMID: 35540028
- PubMed abstract
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- Olaparib for ovarian cancer: a single-institution, multi-site qualitative study.
- Martin NA, Hanna M, Ehret C, Asiedu G, Jatoi A.
- Support Care Cancer. 2022 Jun;30(6):4807-4812. doi: 10.1007/s00520-022-06879-w. Epub 2022 Feb 11.
- PMID: 35146567
- PubMed abstract
- Source abstract
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- Previvorship Posting: Why Breast Cancer Previvors Share Their Stories on Social Media.
- Wellman ML, Holton AE, Kaphingst KA.
- Health Commun. 2022 May 17:1-9. doi: 10.1080/10410236.2022.2074780. Epub ahead of print.
- PMID: 35582752
- PubMed abstract
- Source abstract
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- Genetic testing is becoming more accessible — and it's raising difficult questions.
- Shapiro A, Mehta J, Brown A.
- NPR. 2022 May 10.
- News, Audio
- Free Full Text
News, Audio: How genetic testing led a food lover to live without a stomach. (NPR)
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- African American Women Need to Know More About High-Risk Breast Cancer.
- Johnson F.
- FORCE. Blog. 2022 May 2.
- Blog post
- Free Full Text
Video: Felicia's Story: Genetic Testing Sheds Light on a Family's Cancer History. (YouTube / Breastcancer.org)
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- Volunteer Spotlight – Mike Philbin.
- [No author given]
- FORCE. Blog. 2022 Apr 29.
- Blog post
- Free Full Text
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- "I have always lived with the disease in the family": family adaptation to hereditary cancer-risk.
- Silva E, Gomes P, Matos PM, Silva ER, Silva J, Brandão C, Castro F, Neves MC, Sales CMD.
- BMC Prim Care. 2022 Apr 23;23(1):93. doi: 10.1186/s12875-022-01704-z.
- PMID: 35461227
- PubMed abstract
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- “You are BRCA2-Positive”: Studies that Have Helped Me.
- Dreher ME.
- FORCE. Blog. 2022 Apr 5.
- Blog post
- Free Full Text
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- "I wish that there was more info": characterizing the uncertainty experienced by carriers of pathogenic ATM and/or CHEK2 variants.
- Reyes KG, Clark C, Gerhart M, Newson AJ, Ormond KE.
- Fam Cancer. 2022 Apr;21(2):143-155. doi: 10.1007/s10689-021-00251-3. Epub 2021 Apr 15.
- PMID: 33855648
- PubMed abstract
- Source abstract
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- every.single.one - A New Play about Hereditary Cancer.
- Sampson C.
- FORCE. Blog. 2022 Mar 22.
- Blog post
- Free Full Text
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- Spare Parts: Navigating Ovarian Cancer as a Transgender Man.
- Bilash T, Walker LM.
- J Clin Oncol. 2022 Mar 20;40(9):1027-1029. doi: 10.1200/JCO.21.01249. Epub 2022 Jan 12.
- PMID: 35020447
- PubMed abstract
- Source abstract
- Commentary
- Free Full Text
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- BRCA2, Early-Stage Prostate Cancer and a Decision at 54.
- Axler J.
- FORCE. Blog. 2022 Feb 11.
- Blog post
- Free Full Text
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- A Fertility Journey Through the Eyes of a Young Previvor.
- Walens A.
- FORCE. Blog. 2022 Feb 8.
- Blog post
- Free Full Text
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- Pink Ribbons.
- Prsic E.
- JAMA Oncol. 2022 Feb 1;8(2):207. doi: 10.1001/jamaoncol.2021.6413.
- PMID: 34854869
- PubMed abstract
- Source abstract
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- Chris Evert opens up about her stage 1C ovarian cancer diagnosis.
- McKendry C, Evert C.
- ESPN. 2022 Jan 14.
- Press
- Free Full Text
News: Chris Evert's ovarian cancer diagnosis highlights the importance of genetic counseling and testing. (FORCE. XRAY.)
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- Debbie Denardi: Finding Community With Hereditary Cancer.
- Bringle J.
- FORCE. Blog. 2022 Jan 6.
- Blog post
- Free Full Text
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- Volunteer Spotlight – Will and Maddie.
- T W, Williamson M.
- FORCE. Blog. 2022 Jan 3.
- Blog post
- Free Full Text
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- A dangerous breast cancer gene mutation changed my life. As a health reporter, I want you to know about it. The PALB2 mutation is lesser-known than BRCA. It’s time to change that.
- Berger S.
- The Lily. (Washington Post). 2021 Dec 27.
- Press
- Free Full Text
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- Let’s Talk About It: Hereditary Cancer.
- Meyer Krause C.
- FORCE. Blog. 2021 Dec 22.
- Blog post
- Free Full Text
Video: Let's Talk About It - by Caitlin Meyer Krause (YouTube)
Guide booklet: The Genes Between Us: Your guide to sharing genetic test results with relatives. (FORCE)
Resources: Sharing information about hereditary cancer with children. (FORCE)
Guide booklet: Talking About BRCA in Your Family Tree (FORCE)
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- The Challenges and Rewards of Being a Caregiver in a Hereditary Cancer Family.
- Walens A.
- FORCE. Blog. 2021 Dec 13.
- Blog post
- Free Full Text
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- Genetic Risks for Cancer Should Not Mean Financial Hardship.
- Pierson L, Pierson E.
- New York Times. Opinion. 2021 Nov 26.
Commentary: The Medical Side Effect We Must Stop Ignoring: Financial Toxicity. (Forbes)
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- Conference Session Highlight: I'm Not White, Can I Still Have a Mutation?
- Stallings E, Goldberg D.
- FORCE. Blog. 2021 Nov 19.
- Blog post
- Free Full Text
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- What does the ‘breast cancer gene’ mean for men? For some, pancreatic and prostate cancer.
- Simpson M.
- FORCE. Blog. 2021 Nov 3.
- Blog post
- Free Full Text
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- Volunteer Spotlight – Karen Ewing.
- Ewing K.
- FORCE. Blog. 2021 Nov 2.
- Blog post
- Free Full Text
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- Do Not Wait: Empowering Other Families by Sharing My Story.
- Johnson F.
- FORCE. Blog. 2021 Oct 28.
- Blog post
- Free Full Text
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- After Three Cancer Diagnoses and a Positive BRCA Test, Endometrial Cancer.
- Walter P.
- FORCE. Blog. 2021 Sep 9.
- Blog post
- Free Full Text
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- A Different Kind of Trial: A Litigation Attorney's Take on Being in a National Institutes of Health Clinical Trial.
- Hertz B.
- FORCE. Blog. 2021 Sep 5.
- Blog post
- Free Full Text
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- Volunteer Spotlight – Faith Miller.
- Miller F.
- FORCE. Blog. 2021 Aug 30.
- Blog post
- Free Full Text
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- Volunteer Spotlight - Scott Lanman
- Lanman S.
- FORCE. Blog. 2021 Jun 30.
- Blog post
- Free Full Text
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- One Woman’s Breast Cancer Journey: It’s Not Just About the Breast.
- [No author given]
- FORCE. Blog. 2021 Jun 21.
- Blog post, Book review
- Free Full Text
Information: It's Not (Just) About the Breast. (Well Strong Courage)
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- Ashkenazi Dads Can Pass the BRCA Mutation to Their Kids. It Turns Out I Did.
- Hertz B.
- Kveller. 2021 Jun 14.
- Blog post
- Free Full Text
Blog post: Surviving, and Thriving, as a Dad with a Cancer Gene Mutation. (FORCE Blog)
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- Why I’m Choosing to Keep My Breasts (For Now).
- Kingery R.
- FORCE. Blog. 2021 Jun 11.
- Blog post
- Free Full Text
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- Living Life to its Fullest with an ATM Mutation in a Coronavirus Pandemic.
- Sandhu S.
- FORCE. Blog. 2021 Jun 11.
- Blog post
- Free Full Text
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- Did Breastfeeding my Daughter Reduce my Ovarian Cancer Risk?
- Haarlander T.
- FORCE. Blog. 2021 May 3.
- Blog post
- Free Full Text
Research news: Study: Breastfeeding may lower risk of ovarian cancer in women with BRCA mutations. (FORCE. XRAY.)
Original research:
Hereditary Ovarian Cancer Clinical Study Group. Breastfeeding and the risk of epithelial ovarian cancer among women with a BRCA1 or BRCA2 mutation.
- PMID: 33010967
- PubMed abstract
- Source abstract
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- Volunteer Spotlight – Tanya Temkin.
- Temkin T.
- FORCE. Blog. 2021 Apr 29.
- Blog post
- Free Full Text
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- Family Cancer Stories
- Genetic Support Foundation.
- YouTube. Genetic Support Foundation. 2021 Apr 24.
- Video
- Free Video
Resource: Genetic Support Foundation
Blog post: Behind the Scenes of an Awareness Video: How a Genetic Support Foundation and BRCA Patients are Making a Difference. (FORCE Blog)
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- New advancements in cancer screenings bring hope for the future.
- Meyer Krause C.
- FORCE. Blog. 2021 Apr 23.
- Blog post
- Free Full Text
Research news: Update: FDA approves new imaging drug for detecting spread of prostate cancer. (FORCE. XRAY.)
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- Decision-making for Risk-reducing Salpingo-oophorectomy (RRSO) in Southeast Asian BRCA Mutation Carriers With Breast Cancer: A Qualitative Study.
- Sa'at H, Lee YK, Yoon SY, Wong SW, Woo YL, Barlow-Stewart K, Mohd Taib NA.
- Int J Behav Med. 2021 Mar 31. doi: 10.1007/s12529-021-09984-y. Epub ahead of print.
- PMID: 33791992
- PubMed abstract
- Source abstract
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- Understanding Breast Implant Risks.
- Spittal K.
- FORCE. XRAY. 2021 Mar 30.
- Blog post
- Free Full Text
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- The Importance of Learning Your Pancreatic Cancer Risk When Cancer Runs in Your Family.
- Coffin T.
- FORCE. Blog. 2021 Mar 2.
- Blog post
- Free Full Text
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- Gene Screenings Hold Disease Clues, but Unexplained Anomalies Often Raise Fears.
- Bennett C.
- KHN [Kaiser Health News]. 2021 Feb 9.
- Press
- Free Full Text
Press: Ambiguous genetic test results can be unsettling. Worse, they can lead to needless surgeries. (Washington Post)
Press: My Gene Counsel Quoted in Washington Post and Kaiser Health News. (My Gene Counsel)
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- Honoring the Life of Teri Woodhull.
- [No author given]
- FORCE. Blog. 2021 Jan 13.
- Blog post
- Free Full Text
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- Tracing Our Family Mutation to an Unlikely Place.
- Eldridge C.
- FORCE. Blog. 2021 Jan 13.
- Blog post
- Free Full Text
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- Volunteer Spotlight – Ashley Dedmon
- Dedmon A.
- FORCE. Blog. 2021 Jan 6.
- Blog post
- Free Full Text
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- Beyond BRCA: Cowden Syndrome (PTEN)
- [No author given]
- My Gene Counsel. Genetic Journal. 2021 Jan 6.
- Blog post
- Free Full Text
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- BRCA Family Traditions.
- Spittal K.
- FORCE. Blog. 2020 Dec 10.
- Blog post
- Free Full Text
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- My Previvor Journey: My Robotic Mastectomy.
- Mallonee R.
- FORCE. Blog. 2020 Dec 7.
- Blog post
- Free Full Text
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- Expanded Panel Testing Uncovered My ATM Mutation.
- Horton M.
- FORCE. Blog. 2020 Nov 23.
- Blog post
- Free Full Text
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- A PALB2 Gene has Taken a Terrible Toll on my Family.
- Apke M.
- FORCE. Blog. 2020 Nov 20.
- Blog post
- Free Full Text
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- I am a PALB2 Previvor.
- Dinschel A.
- FORCE. Blog. 2020 Nov 19.
- Blog post
- Free Full Text
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- Finding Hope on the Other Side of Surgery After Learning of my ATM Mutation.
- Townsend C.
- FORCE. Blog. 2020 Nov 13.
- Blog post
- Free Full Text
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- An ATM Gene Mutation Caused My Breast Cancer
- Cohen E.
- FORCE. Blog. 2020 Nov 12.
- Blog post
- Free Full Text
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- Previvor at 25 - The Beginning has just Begun.
- Wilson L.
- FORCE. Blog. 2020 Nov 10.
- Blog post
- Free Full Text
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- Astrophysics Meets Breast Cancer Advocacy.
- Nance S.
- FORCE. Blog. 2020 Oct 8.
- Blog post
- Free full text
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- Celebrities Share Their Breast Cancer Stories.
- [No author given]
- My Gene Counsel. Genetic Journal. 2020 Oct 7.
- Blog post
- Free Full Text
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- To Have or Not To Have Genetic Testing?
- [No author given]
- My Gene Counsel. Genetic Journal Blog. 2020 Sep 29.
- Blog post
- Free Full Text
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- Using patient perspectives to inform communication training materials for health care professionals discussing BRCA mutation testing.
- Shilling V, Catt S, Jenkins V, Fallowfield L.
- Breast Cancer Res Treat. 2020 Aug 18. doi: 10.1007/s10549-020-05871-4. Epub ahead of print.
- PMID: 32812179
- PubMed abstract
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- Parent of Origin Effects on Family Communication of Risk in BRCA+ Women: A Qualitative Investigation of Human Factors in Cascade Screening.
- Dwyer AA, Hesse-Biber S, Flynn B, Remick S.
- Cancers (Basel). 2020 Aug 17;12(8):2316. doi: 10.3390/cancers12082316.
- PMID: 32824510
- PubMed abstract
- Source abstract
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- Pinning Pink: Messages About Hereditary Breast Cancer Risk on Pinterest.
- Miller CA, Henderson AN, Guidry JPD, McGuire KP, Fuemmeler BF.
- J Cancer Educ. 2020 Aug 8. doi: 10.1007/s13187-020-01842-x. Epub ahead of print.
- PMID:32770532
- PubMed abstract
- Source abstract
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- Whether, when, and how to communicate genetic risk to minors: 'I wanted more information but I think they were scared I couldn't handle it'.
- Stuttgen K, McCague A, Bollinger J, Dvoskin R, Mathews D.
- J Genet Couns. 2020 Jul 23. doi: 10.1002/jgc4.1314. Epub ahead of print.
- PMID: 32700788
- PubMed abstract
- Source abstract
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- Advocacy Through Writing and Research.
- Siegel Finer B.
- FORCE. FORCE Blog. 2020 Jul 9.
- Blog post
- Free Full Text
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- Breaking Breast Cancer Color Barriers and Building Bridges.
- Souers J, Thomas M.
- FORCE. FORCE Blog. 2020 Jun 24.
- Blog post
- Free Full Text
Web site: For the Breast of Us
Information Guide: Our Accomplice Guide (For the Breast of Us)
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- Personal Story: A young woman’s story of genetic testing.
- [No author given.]
- For the Breast of Us. 2020 Jun 23.
- Blog post
- Free Full Text
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- For the Breast of Us celebrates one year online.
- Souers J, Thomas M.
- For the Breast of Us. 2020 May 14.
- Blog post
- Free Full Text
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- Engaging Men With BRCA-Related Cancer Risks: Practical Advice for BRCA Risk Management From Male Stakeholders.
- Dean M, Campbell-Salome G, Rauscher EA.
- Am J Mens Health. 2020 May-Jun;14(3):1557988320924932. doi: 10.1177/1557988320924932.
- PMID: 32449425
- PubMed abstract
- Source abstract
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- DNA tests grow more vital in hereditary breast cancer treatments. They also raise unanswerable questions.
- Richards SE.
- Washington Post. Health & Science. 2020 Mar 15.
- Press
- Free Full Text
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- Experiences of BRCA1/2 Gene Mutation-Positive Women With Cancer in Communicating Genetic Risk to Their Relatives.
- Seven M, Shah LL, Daack-Hirsch S, Yazici H.
- Cancer Nurs. 2020 Jan 30. doi: 10.1097/NCC.0000000000000796. [Epub ahead of print]
- PMID: 32022782
- PubMed abstract
- Source abstract
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- Family storytelling about hereditary cancer: Framing shared understandings of risk.
- Campbell-Salome G, Rauscher EA.
- J Genet Couns. 2020 Jan 22. doi: 10.1002/jgc4.1218. [Epub ahead of print]
- PMID: 31970844
- PubMed abstract
- Source abstract
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- Heartbreaking News, Then Tumor Find Leads to Genetic Testing.
- Hackethal V.
- Medscape Oncology. 2019 Dec 27.
- Press
- Free Full Text
Guidelines: Genetic/Familial High-Risk Assessment: Breast, Ovarian, and Pancreatic, NCCN Guidelines Version 1.2020. (NCCN.org. 2019 Dec 4. Version 1.2020.)
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- A Genetic Test Led Seven Women in One Family to Have Major Surgery. Then the Odds Changed.
- Marcus AD.
- The Wall Street Journal. 2019 Dec 20.
Press: Downgraded Variant. (GenomeWeb)
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- "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]
- PMID: 31629161
- PubMed abstract
- Source abstract
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- Beyoncé's Dad Just Revealed His Breast Cancer Diagnosis—Here's What You Need to Know About Male Breast Cancer.
- Brenza A.
- Health. 2019 Oct 3.
- Press
- Free Full Text
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- Luck Is More Than Just A Rainbow: A Previvor’s Story.
- @PALB2Previvor
- FORCE Blog. 2019 Oct 2.
- Blog post
- Free Full Text
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- A young woman's story of genetic testing and risk-reducing mastectomy.
- [No author given]
- FORCE. XRAYS. 2019 Jun 6.
- Commentary
- Free Full Text
Narrative: I Had a Preventive Mastectomy—Then Found Out I Already Had Breast Cancer. (Health)
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- I Had a Preventive Mastectomy—Then Found Out I Already Had Breast Cancer.
- Campoverdi A, Brody B.
- Health. 2019 May 16.
- Press
- Free Full Text
Blog post: Personal Story: A young woman’s story of genetic testing. (For the Breast of US)
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- 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
- Free Full Text
Press: Behind the story: For a daughter of immigrants, a story stirs up memories of her own family. (Los Angeles Times)
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- "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]
- PMID: 30963646
- PubMed abstract
- Source abstract
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- 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.
- PMID: 30051759
- PubMed abstract
- Source abstract
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- Pricey Precision Medicine Often Financially Toxic For Cancer Patients.
- Szabo L.
- Kaiser Health News. 2018 Nov 1.
- News
- Free Full Text
Research News: The cost of cancer care and impact of financial hardship on treatment. (FORCE XRAYS)
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- 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.)
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- Our CEO Interviews Author of “Mom’s Genes”, for Kids.
- [No author given]
- My Gene Counsel. 2018 Sep 26.
- Blog post
- Free Full Text
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- 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.
Essay: My Father’s Fight Against the Breast-Cancer Gene. (The Wall Street Journal.)
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- 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)
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- 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.
- PMID: 29781468
- PubMed abstract
- Source abstract
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- Juliet's story: No reconstruction is a post-mastectomy option.
- [No author given]
- FORCE. XRAYS. 2018 May 24.
- Review, Commentary
- Free Full Text
Blog post: I felt empowered by choosing not to have a reconstruction. (Breast Cancer Care)
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- Take your time, follow your heart: strategies for communication about family planning.
- [No author given]
- FORCE. XRAYS. 2018 Mar 28.
- Research news
- Free Full Text
"Take your time, then follow your heart:" Previvors' advice for communicating about family planning after testing positive for a BRCA genetic variant.
- PMID: 29283615
- PubMed abstract
- Source abstract
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- 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.)
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- When BRCA Mutations Meet Complications.
- Clausen AM.
- Global Health NOW. 2018 Mar 20.
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- "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.
- PMID: 29283615
- PubMed abstract
- Source abstract
Research news: Take your time, follow your heart: strategies for communication about family planning. (FORCE. XRAYS.)
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- VUS Reclassified to "Suspected Deleterious": When Genetic Counseling Updates Become Life-Saving.
- [No author given]
- My Gene Counsel. 2017 Nov 30.
- Blog post
- Free Full Text
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- The power of shared experience: Empowering women to face their cancer risk.
- Caitlin Lopez
- NSGC blog, 2017 Aug 30.
- Blog post
- Free Full Text
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- "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.
- PMID: 28529228
- PubMed abstract
- Source abstract
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- Beyond BRCA: Hereditary Diffuse Gastric Cancer Syndrome and CDH1 Mutations.
- [No author given]
- My Gene Counsel. 2016 Nov 22.
- Blog post
- Free Full Text
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- Joanna Rudnick, Filmmaker of BRCA Previvor "In the Family" Documentary.
- [No author given]
- My Gene Counsel. 2016 Sep 29.
- Blog post
- Free Full Text
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- Celebrities Share Cancer Stories Part 1.
- [No author given]
- My Gene Counsel. 2016 Sep 27.
- Blog post
- Free Full Text
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- Why I Won’t Get the Genetic Test for Breast Cancer.
- Cynthia Graber.
- Wired. Science. 2016 Sep 27.
- Press article
- Free Full Text
News: Genetic testing has become more affordable and available. Should you get it? (FORCE)
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- Sue Friedman, Founder of FORCE, Shares
- Sue Friedman
- My Gene Counsel. 2016 Sep 21.
- Blog post
- Free Full Text
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- Waiting for Cancer
- Patricia Fall.
- Well. NY Times. 2016 Sep 1.
- Press article
- Free Full Text
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- 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.
- Book Review
- Full Text
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- 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.
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- Podcast: Don't Allow The Wrong Genetic Test To Be Ordered For Your Family.
- Ellen T. Matloff.
- My Gene Counsel. 2016 Apr 26.
- Blog post, Podcast
- Free Full Text
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- Beyond BRCA: CHEK2.
- [No author given]
- My Gene Counsel. 2016 Apr 21.
- Blog post
- Free Full Text
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- 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.
- Interview, Book Review, Audio/Transcript
- Free Full Text
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- Podcast: Making Prophylactic Surgery Decisions.
- Ellen T. Matloff.
- My Gene Counsel. 2016 Feb 24.
- Blog post, Podcast
- Free Full Text
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- Beyond BRCA: Testing negative and living in the 'gray zone' for cancer risk.
- [No author given]
- My Gene Counsel. 2016 Feb 16.
- Blog post
- Free Full Text
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- My legacy to my daughters: BRCA and cancer?
- Lorrie Goldin.
- Washington Post. 2016 Jan 25.
- Press article
- Free Full Text
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- 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.
- Blog post
- Free Full Text
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- 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.
- PMID: 26612439
- PubMed abstract
- Source abstract
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- National Caregivers Month: Gabbie & Meaghan’s Story.
- [No author given].
- My Gene Counsel. 2015 Nov 19.
- Blog post
- Free Full Text
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- 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.
- Blog post
- Free Full Text
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- Podcast: Prophylactic Surgery Decisions Before BRCA Testing.
- [No author given]
- My Gene Counsel. 2015 Sep 29.
- Blog post, Podcast
- Free Full Text
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- Podcast: Real Men Get Genetic Counseling.
- [No author given]
- My Gene Counsel. 2015 Jun 30.
- Blog post, Podcast
- Free Full Text
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- Podcast: I Will Survive!
- Ellen T. Matloff.
- My Gene Counsel. 2015 Jun 2.
- Blog post, Podcast
- Free Full Text
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- Podcast: Genetic Counseling for Survivors.
- Ellen T. Matloff.
- My Gene Counsel. 2015 May 26.
- Blog post, Podcast
- Free Full Text
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- How Genetic Tests Can Reveal a Hidden Family History of Cancer.
- [No author given]
- NBC Nightly News. 2015 May 20.
- Press article, Video
- Free Full Text
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- Two Women, Two Results: The Agonizing Wait for Cancer Gene Tests.
- [No author given]
- NBC Nightly News. 2015 May 19.
- Press article, Video
- Free Full Text
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- A WILD RIDE: A Genetic Counselor Undergoes Genetic Testing.
- Caroline Lieber.
- NSGC Blog. 2015 May 13.
- Blog post
- Free Full Text
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- Lizzie Stark's ‘Real Steps to Survival’
- Seth Berkman
- The Sisterhood, 2015 Jan 6
- Blog post
- Free Full Text
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- 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.
- PMID: 26657683
- PubMed abstract
- Source abstract
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- Unknown significance.
- Couzin-Frankel J.
- Science. 2014 Dec 5;346(6214):1167-70. doi: 10.1126/science.346.6214.1167.
- PMID: 25477439
- PubMed abstract
- Source abstract
- News
- Free Full Text
Press: Feature: Peering into my genome (Science)
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- 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.
- Performance review
- Free Full Text
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- 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.
- PMID: 24880189
- PubMed abstract
- Source abstract
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- Knowing BRCA Changed My Life.
- Debbie Wasserman Schultz.
- The Topic Is Cancer, CDC's Division of Cancer Prevention and Control, 2014 Jun 10.
- Blog post
- Free Full Text
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- Triple-negative inflammatory breast cancer survivor: Facing new questions with genetic testing.
- Kellie Bramlet.
- Cancerwise Blog, MD Anderson Cancer Center, 2014 Feb 3.
- Blog post
- Free Full Text
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- Mapping Jewish Identities: Migratory Histories and the Transnational Re-Framing of ‘Ashkenazi BRCA Mutations’ in the UK and Brazil.
- Mozersky J, Gibbon S.
- In: Breast Cancer Gene Research and Medical Practices: Transnational Perspectives in the Time of BRCA. Oxon (UK): Routledge; 2014. Gibbon S, Joseph G, Mozersky J, zur Nieden A, Palfner S, editors. Wellcome Trust–Funded Monographs and Book Chapters.
- PMID: 32134615
- PubMed abstract
- Book
- Free Full Text
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- My Cancer Story, My Genes, My Information.
- Joanna Rudnick.
- Huffington Post. The Blog. 2013 Nov 19.
- Blog post
- Free Full Text
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- Before Angelina: Portraits of Breast Cancer Previvors and Survivors.
- [No author given]
- Yale Cancer Genetic Counseling. 2013 Nov 1.
- Blog post
- Free Full Text
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- Before Angelina: Portraits of Breast Cancer Previvors and Survivors.
- [No author given]
- Time. Healthland. 2013 Oct 28.
- Press article
- Free Full Text
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- 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.
- PMID: 24131499
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- A Dispatch from the Genetic Frontier.
- Theo Bloom.
- PLOS Biologue. 2013 Sep 24.
- Blog post
- Free Full Text
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- 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.
- PMID: 23899988
- PubMed abstract
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- My Medical Choice.
- Angelina Jolie.
- NY Times. The Opinion Pages. 2013 May 14.
- Narrative, Commentary
- Free Full Text
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- 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.
- PMID: 22544165
- PubMed abstract
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- 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.
- PMID: 22691626
- PubMed abstract
- Source abstract
- Case Report, Commentary
- Free Full Text
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- 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.
- PMID: 22670560
- PubMed abstract
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- When work, family and friendship collide.
- Macshane M, Mountain H.
- J Genet Couns. 2012 Apr;21(2):215-9. Epub 2011 Dec 9.
- PMID: 22160558
- PubMed abstract
- Source abstract