Genetic Testing Consideration: Family Sharing

ICARE Newsletter Fall 2024

Community Spotlight: The Patient and the Researcher Shares Her Uncertain Future and Lessons She’s Learned

By Marleah Dean Kruzel, PhD, BRCA2 Previvor When I was eight years old, my mother found a lump in her breast – barely noticeable. For a few years, I watched her undergo chemotherapy, radiation, and a prophylactic mastectomy and reconstruction. Since then, my maternal aunt and grandmother also fought breast cancer, and we learned my …

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Permanent link to this article: https://inheritedcancer.net/icare-newsletter-fall-2024-community-spotlight-the-patient-and-the-researcher-shares-her-uncertain-future-and-lessons-shes-learned/

ICARE Newsletter Fall 2024

American Society of Clinical Oncology (ASCO) Guideline Update: Selecting Genetic Tests in Patients with Various Cancers

What elements are most important in the collection of family history? When and how to use multigene panel testing when indicated? Which genes should be tested based on cancer type? Among patients with tumor testing, who should be offered germline testing? For a full list of recommendations in this guideline, the article is available at: …

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Permanent link to this article: https://inheritedcancer.net/icare-newsletter-fall-2024-american-society-of-clinical-oncology-asco-guideline-update-selecting-genetic-tests-in-patients-with-various-cancers/

ICARE Newsletter Fall 2024

National Comprehensive Cancer Network (NCCN) Guideline Updates

Genetic/Familial High-Risk Assessment: Breast, Ovarian, and Pancreatic Cancer – Released September 11th, 2024 (V1.2025) Check out the full guidelines by creating a FREE account at www.nccn.org/professionals/physician_gls/pdf/genetics_bop.pdf Testing Updates: Gene Updates: Genetic/Familial High-Risk Assessment: Colorectal, Endometrial, and Gastric Cancer – Released August 8th, 2024 (V1.2024) Check out the full guidelines by creating a FREE account at …

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Permanent link to this article: https://inheritedcancer.net/icare-newsletter-fall-2024-national-comprehensive-cancer-network-nccn-guideline-updates/

ICARE Social Media Post September 2024

NCCN Breast, Ovarian, and Pancreatic Cancer Guidelines Update

The National Comprehensive Cancer Network (NCCN) released updated Genetic/Familial High-Risk Assessment: Breast, Ovarian, and Pancreatic Cancer guidelines on September 11th, 2024. Some updates include ⤸ To read more, you can check out the full guidelines by creating a FREE account at:https://www.nccn.org/professionals/physician_gls/pdf/genetics_bop.pdf

Permanent link to this article: https://inheritedcancer.net/post91224/

ICARE Featured Video July 2024

Coping with Hereditary Cancer: Managing Emotional Distress and Communicating with Family

Below is a featured video from the July 2024 patient forum, during which patients had the opportunity to ask questions and discuss how to manage emotional distress and communicate with family about inherited cancer predisposition with our expert panelists.

Permanent link to this article: https://inheritedcancer.net/video70924/

ICARE Newsletter Fall 2023

Community Spotlight

My paternal grandparents were my heroes. Wise beyond their time, they relished teaching our familythat knowledge is power, health is everything, and love is unconditional. Back then, Prevention healthmagazine and vitamin supplements filled their mailbox and 1960’s exercise guru Jack LaLane, and health foodadvocate Euell Gibbons, beckoned new followers from a talking picture box in …

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Permanent link to this article: https://inheritedcancer.net/icare-newsletter-fall-2023-community-spotlight/

ICARE Social Media Post April 2023

Applying the Framework for Interventions to Increase Family Communication

A new study 𝗯𝘆 𝗼𝘂𝗿 𝘁𝗲𝗮𝗺 used the Framework for Developing and Evaluating Complex Interventions (FDECI) to evaluate an intervention to improve family communication of positive genetic test results for inherited cancer. The first FDECI phases were beneficial for improving the intervention and planning for continual effectiveness and future implementation phases. Use the link in …

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Permanent link to this article: https://inheritedcancer.net/post41023/

Other Cancer Genetics Webinar April 2023

Communicating about Inherited Cancer Risk, Uncertainty, and Decision Making

Below you may watch an exciting presentation about communicating about inherited cancer risk, uncertainty, and decision making by Marleah Dean Kruzel, PhD from the University of South Florida.

Permanent link to this article: https://inheritedcancer.net/video40423/

ICARE Social Media Post February 2023

Why is learning about inherited cancer important to guide care?

Why have genetic testing? Genetic testing for inherited cancer can help guide care, including:• Cancer treatment plans, such as chemotherapy, drugs, surgery, and radiation• Cancer screening and prevention Sharing genetic test results can also help family members understand their cancer risks.⁠

Permanent link to this article: https://inheritedcancer.net/post22423/

ICARE Social Media Post September 2021

USA Today Article: Fighting Cancer with Your Own Family History

Check out the full 𝘜𝘚𝘈 𝘛𝘰𝘥𝘢𝘺 article, featuring commentary from Dr. Tuya Pal (ICARE Founder), highlighting the importance of PALB2 as an inherited breast cancer gene: https://www.futureofpersonalhealth.com/breast-health/fighting-cancer-with-your-own-family-history/# Additional guidance is available through an impactful PALB2 practice resource recently published through ACMG: https://www.acmg.net/PDFLibrary/41436_2021_1151_OnlinePDF.pdf Reference: Tischkowitz, et al. Genet Med. 2021 Aug;23(8):1416-1423. PMID: 33976419

Permanent link to this article: https://inheritedcancer.net/post92221/

ICARE Social Media Post April 2021

Family Communication of Genetic Test Results Among Women with Inherited Breast Cancer Genes

Check out a recent article led by the ICARE team, published in the Journal of Genetic Counseling, outlining family communication of genetic test results among female BRCA1/2, PALB2, CHEK2, and ATM carriers. Check out the full article at: https://onlinelibrary.wiley.com/doi/full/10.1002/jgc4.1356

Permanent link to this article: https://inheritedcancer.net/post40221/

ICARE Newsletter Winter 2021

Learning You Have a Mutation in an Inherited Cancer Gene: What’s Next?

The benefits achieved through genetic testing for inherited cancer only happen by acting upon the results. This can be through guiding cancer treatment, receiving appropriate cancer risk management strategies, and sharing results with at-risk family members so they too can benefit from this information. We recently reported on results of our study, made possible through …

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Permanent link to this article: https://inheritedcancer.net/6nlw2021/

ICARE Social Media Post February 2021

Sharing Genetic Test Results with Family Members of BRCA, PALB2, CHEK2, and ATM Carriers

Our team recently published “Sharing Genetic Test Results with Family Members of 𝘉𝘙𝘊𝘈, 𝘗𝘈𝘓𝘉2, 𝘊𝘏𝘌𝘒2, and 𝘈𝘛𝘔 Carriers” in 𝘗𝘢𝘵𝘪𝘦𝘯𝘵 𝘌𝘥𝘶𝘤𝘢𝘵𝘪𝘰𝘯 𝘢𝘯𝘥 𝘊𝘰𝘶𝘯𝘴𝘦𝘭𝘪𝘯𝘨 Special Issue on Genetics. View the article available at:https://www.sciencedirect.com/science/article/pii/S0738399120306832 Challenges and barriers to family sharing included concern for family members’ reactions, complexities of information, lack of closeness, perceived relevance, & emotional impact. …

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Permanent link to this article: https://inheritedcancer.net/post20821/

ICARE Social Media Post January 2021

Sharing Genetic Test Results with Family Members of BRCA, PALB2, CHEK2, and ATM

Check out a new article by the ICARE team, published in Patient Education and Counseling, evaluating the motivators and barriers to sharing personal genetic test results with family members. The article is 𝗳𝗿𝗲𝗲 to access and download 𝘂𝗻𝘁𝗶𝗹 𝗠𝗮𝗿𝗰𝗵 𝟱𝘁𝗵 at: https://www.sciencedirect.com/science/article/pii/S0738399120306832

Permanent link to this article: https://inheritedcancer.net/post11521/

ICARE Social Media Post January 2021

Family Sharing Resources: GeneSHARE

With the tremendous advances in gene-based care among those at risk for inherited cancer, we are trying to develop and improve tools and strategies to make it easier for more people to benefit from genetic testing. We are excited to share with you a free online toolkit called 𝗚𝗲𝗻𝗲𝗦𝗛𝗔𝗥𝗘, which is aimed at helping patients …

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Permanent link to this article: https://inheritedcancer.net/post10821/

ICARE Publication January 2021

Sharing genetic test results with family members of BRCA, PALB2, CHEK2, and ATM carriers

Abstract Objective: This study explored motivators and challenges/barriers to sharing personal genetic test results (GTR) with family members (FM). Methods: Semi-structured, in-depth interviews were conducted with 62 women who had a pathogenic or likely pathogenic (P/LP) variant in a BRCA, PALB2, CHEK2, or ATM gene. Selective qualitative data analysis focused on eliciting motivators and challenges/barriers …

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Permanent link to this article: https://inheritedcancer.net/pub10521/

ICARE Publication November 2020

Family communication of genetic test results among women with inherited breast cancer genes

Abstract Identification of inherited breast cancer may guide care. These benefits can be amplified through communication of genetic test results with at-risk family members and subsequent family testing (FT). Females with a pathogenic/likely pathogenic (P/LP) variant in BRCA1/2, PALB2, CHEK2, and/or ATM were surveyed about family communication (FC) of genetic test results and FT. Comparisons …

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Permanent link to this article: https://inheritedcancer.net/pub111020/

ICARE Social Media Post August 2020

Presymptomatic BRCA1/2 Carriers May Have Better Outcomes

Check out the article at: https://jamanetwork.com/journals/jamaoncology/article-abstract/2768011

Permanent link to this article: https://inheritedcancer.net/post80720/

ICARE Publication July 2020

Update on multi-gene panel testing and communication of genetic test results

Abstract With technological advances, multi-gene panel testing has become increasingly used to identify patients at risk for hereditary breast cancer (HBC). There are currently evidence-based interventions and breast cancer screening strategies that exist for cancer prevention and early detection among patients with HBC. Moreover, in addition to the personal impact of identifying HBC, this information …

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Permanent link to this article: https://inheritedcancer.net/pub70820/

ICARE Social Media Post March 2020

Study Based on ICARE Participants with ATM and CHEK2 Mutations

Women with ATM and CHEK2 mutations have a lifetime breast cancer risk greater than 20%, which is the threshold at which screening through a breast MRI is recommended. A recently published study based on ICARE participants with ATM and CHEK2 mutations suggested that most female family members of ATM and CHEK2 mutation carriers do not …

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Permanent link to this article: https://inheritedcancer.net/post32020/

ICARE Newsletter Winter 2020

New Study Based on ICARE Participants with ATM & CHEK2 Mutations

We are excited to tell you about our recently published results based solely on data from ICARE participants with ATM and CHEK2 mutations. Our findings suggest most female family members of ATM and CHEK2 mutation carriers do not qualify for breast MRI screening based on family cancer history alone. This emphasizes the need to share …

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Permanent link to this article: https://inheritedcancer.net/icare-newsletter-winter-2020new-study-based-on-icare-participants-with-atm-chek2-mutations/

ICARE Publication January 2020

The big reveal: Family disclosure patterns of BRCA genetic test results among young Black women with invasive breast cancer

Abstract Despite higher incidence and mortality of breast cancer among younger Black women, genetic testing outcomes remain severely understudied among Blacks. Past research on disclosure of genetic testing results to family members has disproportionately focused on White, educated, high socioeconomic status women. This study addresses this gap in knowledge by assessing (a) to whom Black …

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Permanent link to this article: https://inheritedcancer.net/pub10720/

ICARE Social Media Post September 2019

Family Sharing Resources: GeneSHARE

With the tremendous advances in gene-based care among those with inherited cancer risk, we are trying to develop tools and strategies to make it easier for more people to benefit from genetic education and testing. We are proud to introduce you to GeneSHARE, a free online toolkit for YOU, to help share positive test results …

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Permanent link to this article: https://inheritedcancer.net/post91319/

ICARE Newsletter Winter 2016

The Importance of Sharing Genetic Test Results with Family Members

Once an individual has had genetic testing for inherited cancer predisposition this information could help their close family members.  For example, when a BRCA mutation or a mutation in another inherited cancer gene is found, it is important for close family members (with or without a diagnosis of cancer) to know so they too can …

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Permanent link to this article: https://inheritedcancer.net/1nlw2016/

ICARE Newsletter Summer 2013

Sharing BRCA Test Results with Adolescent and Young Adult Children—What Does the Latest Research Show?

While there are specific recommendations against BRCA testing for minors,1 guidelines are less clear about whether parents should share their own test results with their children. Because there are no recommended surveillance or risk reduction options prior to age 25 for known BRCA mutation carriers, there has been debate about balancing the benefits of sharing …

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Permanent link to this article: https://inheritedcancer.net/2nls2013/

ICARE Newsletter Winter 2013

Ask the Expert

The following question was addressed by Dr. Lora Thompson, a Clinical Psychologist at the Moffitt Cancer Center:                                                             Q. How do I talk to family members about my genetic test results? A. The ability to share risk information with family members is a common reason why many individuals undergo genetic testing. Family members may feel appreciative …

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Permanent link to this article: https://inheritedcancer.net/4nlw2013/