Subject Guide for Those Newly Diagnosed with Breast Cancer or the BRCA2+ Gene
Subject Guide: Breast Cancer, BRCA+ Genetic Testing, and Prophylactic Surgery
Introduction:
This subject guide is for those newly diagnosed with breast cancer, or those who may have a friend or family member diagnosed with breast cancer. You’ll find information on what breast cancer is, types of breast cancer, and prevention and treatment options. A small portion of all breast cancer types have a common bond which is an inherited gene mutation. Different types of gene mutations, such as BRCA1+ and BRCA2+, are discussed as well as how to present this sensitive type of information to younger family members. Since knowledge is power, many patients with a genetic mutation diagnosis empower themselves by completing different prophylactic surgeries to prevent a future cancer from happening.
List of keywords:
- breast cancer
- genetic testing
- medical screening
- BRCA1
- BRCA2
- prophylactic mastectomy
- cancer prevention
- BRCA genes
- breast cancer treatment
- cancer prevention
- cancer screening
Annotated Bibliography of Useful Sources for Breast Cancer
Types of Breast Cancer – Online Resources
Not all breast cancers are alike, and each has its own treatment plan.
The Dr. Susan Love Foundation for Breast Cancer Research is a 501(c)(3) nonprofit with breast cancer research information. This page details what ER+ and PR+ hormone receptors are, and what hormonal therapies are available for these hormone sensitive breast cancers.
Mayo Clinic – Breast Cancer Types: What Your Type Means
From the Mayo Clinic, this webpage goes into detail what the different types of breast cancer are and how they differ from each other. Ductal carcinoma, lobular carcinoma, connective tissue sarcoma, ER+/-, PR+/-, HR+/-, and triple negative are discussed.
National Breast Cancer Foundation, Inc. – Triple Negative Breast Cancer
The National Breast Cancer Foundation is a 501(c)(3) nonprofit advocating for breast cancer awareness. Their webpage Triple Negative Breast Cancer has information on triple negative breast cancer, a type of breast cancer that tests negative for all three hormonal receptors.
WebMD.com – Inflammatory Breast Cancer (IBC)
This webpage details the rare and aggressive form of breast cancer, inflammatory breast cancer. It discusses how it differs from other breast cancers.
Genetic Testing and Prophylactic Surgery – Online Resources
Periodicals and Journals. Listing of useful online resources with topics on genetic testing and mastectomy surgeries through firsthand testimonials, and interviews with medical professionals.
Esserman, Laura, et al. “You Don’t Have to Dread Breast Cancer.” Health, vol. 27, no. 6, July 2013, p. 82. EBSCOhost, search.ebscohost.com/login.aspx?direct=true&db=hxh&AN=88057763&site=ehost-live&scope=site.
- This article talks about who should look into genetic testing and why it isn’t needed for most women. Also, what the risk is of developing breast cancer for both women who do have a genetic abnormality and those who do not. It lists choices that women have who are BRCA carriers to reduce their risk for developing breast cancer.
Graves, Ginny. “Double or Nothing.” Health, vol. 30, no. 8, Oct. 2016, pp. 83–90. EBSCOhost, search.ebscohost.com/login.aspx?direct=true&db=hxh&AN=117994808&site=ehost-live&scope=site.
- Chief of surgical oncology, Michael Sabel, from the University of Michigan discusses reasons women decide to remove both breasts when breast cancer was found in only one. This journal article studies the link between BRCA1 and BRCA2 mutations and a significant risk of contralateral breast cancer, and knowing the risk modifiers can help a patient make better choices. It also discusses a possible link between an initial breast cancer diagnosis and a second cancer found in the opposite breast later.
Hesman Saey, Tina, and Laura Sanders. “Risks and Riddles.” Science News, vol. 193, no. 10, June 2018, pp. 22–26. EBSCOhost, search.ebscohost.com/login.aspx?direct=true&db=hxh&AN=129749672&site=ehost-live&scope=site.
- This article focuses on genetic testing and the risks from getting a third-party analysis from genetic testing companies, and how results or interpretation can vary between the labs.
Lehrman, Sally. “Should You Get the Breast Cancer Gene Test?” Health (Time Inc. Health), vol. 12, no. 8, Nov. 1998, p. 129. EBSCOhost, search.ebscohost.com/login.aspx?direct=true&db=hxh&AN=1241949&site=ehost-live&scope=site.
- This guide helps to clear confusion of what genetic testing is and what you should know if you are considering it.
Repinski, Karyn. “I Had a Double Mastectomy.” Shape, vol. 31, no. 2, Oct. 2011, pp. 114–116. EBSCOhost, search.ebscohost.com/login.aspx?direct=true&db=hxh&AN=66570613&site=ehost-live&scope=site.
- Here is a first person story of the psychological effects of prophylactic surgery (double mastectomy) to prevent breast cancer.
Seppa, N. “Can Preventive Mastectomies Prolong Lives?” Science News, vol. 151, no. 20, May 1997, p. 301. EBSCOhost, doi:10.2307/4018505.
- The Dana-Farber Cancer Institute and Harvard Medical School devised a model that gauged the value of voluntary mastectomies and found that a woman carrying a breast cancer genetic mutation could add years to her life if she underwent this type of surgery.
Shaffer, Alyssa. “Can Genetic Testing Save Your Life?” Shape, vol. 29, no. 8, Apr. 2010, pp. 100–104. EBSCOhost, search.ebscohost.com/login.aspx?direct=true&db=hxh&AN=49034861&site=ehost-live&scope=site.
- Screening for genetic mutations can help make more informed decisions about current health issues and help make future health choices.
“The Breast Cancer Genes.” Harvard Women’s Health Watch, vol. 2, no. 4, Dec. 1994, p. 1. EBSCOhost, search.ebscohost.com/login.aspx?direct=true&db=hxh&AN=9412221325&site=ehost-live&scope=site.
- This article discusses what the BRCA1 and BRCA2 gene mutations are and how the genetic mutations were identified.
Book Resources (Print)
These are books on the BRCA gene mutation, and making the decision to have preventative (prophylactic) breast reconstruction surgery because of the diagnosis. The authors of the books or the writers of the stories compiled inside the books are from women who have gone through the shocking initial diagnosis to making the choice of prophylactic surgery. All books are available from Amazon. Links are made through my affiliate link, and any purchase helps support this site. Thanks.
Brodnick, Caitlin. Dangerous Boobies: Breaking Up with My Time-Bomb Breasts. Seal Press, 2017.
- Firsthand account of undergoing gene screening after seeing family members diagnosed with cancer. After her positive diagnosis of a BRCA gene mutation, Brodnick talks about her decision to undergo a preventative double mastectomy and her journey to be confident in her new body.
Foster, Clarissa. Understanding BRCA: Living with the Breast Cancer Gene. Hammersmith Health Books, 2017. Print.
- The author is a woman who is diagnosed with a genetic mutation increasing her risk of breast cancer. This book details what the gene mutation is and explains much of the medical jargon involving this diagnosis making it easier to understand.
Friedman, Sue, et al. Confronting Hereditary Breast and Ovarian Cancer: Identify Your Risk, Understand Your Options, Change Your Destiny. Johns Hopkins University Press, 2012.
- This book is written by three women who are breast cancer survivors as well as advocates who discuss genetic counseling, and the myths and questions involving this topic.
Morris, Joi L., and Ora K. Gordon. Positive Results: Making the Best Decisions When You’re at High Risk for Breast or Ovarian Cancer. Prometheus Books, 2010.
- This book talks about terms, risks, surgery, and menopause for women diagnosed with a genetic breast mutation or those who are considering getting tested.
Port, Dina Roth. Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions. Avery, 2010.
- This book talks about the risks of breast cancer and the emotions of going through genetic testing. It showcases stories of women who have faced the choice of personal preventative health care.
Steligo, Kathy. The Breast Reconstruction Guidebook: Issues and Answers from Research to Recovery. 4th ed. Carlo Press, 2003.
- This book has firsthand stories of women who have gone through breast reconstruction surgery. It also has medical descriptions and definitions of the different surgeries involving reconstruction.
Website Resources
These are websites that offer great information on breast cancer topics such as terminology, screening, signs and symptoms, diagnosis, treatment, prevention, and support. They also offer a starting point in research for newly diagnosed patients.
BreastCancer.org is an online organization with information on breast cancer including screening, diagnosis, types of breast cancer, treatment options, how the disease affects people and their families, and risk factors. The online community is a resource for sharing information and getting support from, and offering support for, members of the forum.
Cancer.net is the patient information website for ASCO, the American Society of Clinical Oncology which is a member group of cancer physicians. The breast cancer portal of the site contains information on breast cancer types, statistics, screening, medical illustrations, types of treatment, and follow-up care. It also has a section on the latest research where users can search inside clinical trial databases and view the latest in breast cancer research from oncology meetings.
This site is the breast cancer section of the American Cancer Society and has a wealth of breast cancer topics including what it is, signs and symptoms, prevention, and early detection. It has information on both cancerous and non-cancerous breast conditions, and breast cancer survivor information.
From the Centers for Disease Control and Prevention, the Breast Cancer portal has breast cancer statistics and basic breast cancer information and terminology. It also has useful resources such as NBCCEDP (National Breast and Cervical Cancer Early Detection Program) which provides free or low-cost breast and cervical cancer screenings to women in need, and the Bring Your Brave Campaign which provides breast cancer support and information to women younger than 45 faced with breast cancer.
Genetic Home Reference – Your Guide to Understanding Genetic Conditions: Breast Cancer
The Genetic Home Reference is the consumer site from the National Library of Medicine and the National Institute of Health. The breast cancer portal has important information on inherited diseases and how cancer is elevated in those with specific genetic mutations. It describes what the inheritance pattern is and the ways a genetic mutation can be inherited.
SurvivingBreastCancer.org is focused on empowering breast cancer survivors and their caregivers by providing community support and breast cancer education. It’s a 501(c)(3) nonprofit, and the site lists local events for breast cancer support and has a library of inspirational and informational podcasts from survivors and medical professionals.
The Susan G. Komen organization is a 501(c)(3) nonprofit organization focusing on breast cancer advocacy, research, and support. The site has breast cancer information such as risk factors, screening, treatment, survivorship and financial assistance. The Komen Breast Care Helpline (1-877-465-6636) offers free information and support from oncology social workers or breast cancer specialists.
Helpful Downloadable Information
Here are helpful PDF files that can be downloaded and read at any time. These topic guides can also be starting points for research and offer talking points to discuss with your doctor or oncologist.
Breast Cancer Early Detection and Diagnosis (PDF)
This comprehensive 61-page guide from the American Cancer Society contains useful information on regular screening to catch breast cancer at its earliest. It has lots of information on mammograms, breast ultrasounds, breast MRIs, and other breast imaging tests. It also has a useful list of questions to ask before a breast biopsy.
Breast Self-Examination (BSE): How to Examine Your Breast (PDF)
This 2-page brochure from Missouri’s Breast and Cervical Cancer Screening Program shows step by step how to properly do a breast self-examination in front of a mirror.
Making Breast Cancer Treatment Decisions (PDF)
This 2-page guide published by the Susan G. Komen organization describes different breast cancer treatments including types of surgery, chemotherapy, hormone therapy, and targeted therapy.
Surgery Choices for Women with DCIS or Breast Cancer (PDF)
This 24-page booklet was created for women who have DCIS or breast cancer and choose to have it removed through surgery. It goes into surgery choices (breast-sparing surgery, mastectomy, or mastectomy with reconstruction surgery. It also gives information on lymph nodes, lymphedema, and sentinel lymph node biopsies. There is a chart with different surgery choices with tips for pre-surgery, post-op, and life after a major breast surgery.
Talking About BRCA in Your Family Tree (PDF)
This colorfully illustrated 20-page booklet is from FORCE (Facing Our Risk of Cancer Empowered) and is funded by the National Society of Genetic Counselors. It gives caring and supportive information for parents who are preparing to discuss a BRCA diagnosis with children. It goes over parent readiness, child readiness, and offers tips on opening communication to minors on this sensitive subject.
What You Need to Know About Breast Cancer Treatment
Published by Alabama Public Health, this 4-page guide describes breast cancer staging (Stages 0-4), provides real life examples of tumor sizes and lymph node info, and shows what the different forms of breast surgery entails along with reconstruction options, and treatment options including different therapies.
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