FORCE Blog | patient advocacy

Hereditary Cancer and Genetic Testing

Hereditary Cancer

Learn about gene changes called mutations, how inherited mutations can lead to cancer, what types of cancer may be hereditary and how parents can pass gene mutations to their children.

What is Genetic Testing?

Explore information about genetic testing for an inherited mutation, the benefits and limitations of genetic testing and the type of results you might receive.

How to Get Genetic Testing

Review expert guidelines regarding who should consider genetic testing, how to find a genetics expert and how to move forward with testing.

Hereditary Cancer Genes and Risk

Read about different genes that are linked to hereditary cancer and the risks associated with inherited mutations in these genes.

After Testing, Now What?

Learn how to make medical decisions and assemble your health care team once you receive your genetic test results.

Sharing with Family

Discover steps that will help you prepare to communicate your family medical history or genetic test results with relatives.

Risk Management and Treatment

Screening and Risk Reduction

Review national guidelines for cancer screening and prevention; this information is listed by gene mutation and by cancer type.

Cancer Treatment

Read about cancer treatment options listed by gene mutation, type of cancer and type of treatment.

Reconstruction or Going Flat

Understand options for having breast reconstruction or not after mastectomy.

Menopause

Learn about symptoms and options for managing early menopause caused by cancer treatment or preventive surgery.

Wellbeing and Survivorship

Discover how cancer treatment and prevention affects long-term health, quality of life and emotional well-being; explore options for addressing these issues.

Fertility and Family Planning

Understand the effects of cancer treatment and prevention on fertility and family planning, how pregnancy impacts hereditary cancer risk and options for assisted reproduction.

Research and Clinical Trials

Why Enroll in Research?

Learn why you should consider enrolling in a research study and your rights and protections as a research participant.

How to Find Studies

These tips and resources will help you locate clinical trials and studies enrolling people like you.

Search and Enroll

Ready to enroll? Our tools will help match you to hereditary cancer detection, prevention and treatment studies.

Help Shape Research

FORCE trains patients who are new to science to use their personal experiences to help guide hereditary cancer research.

Research Collaborations

Learn about ongoing studies, and the role that FORCE, our research advocates, and our partners have played in shaping the research.

Privacy, Policy and Legal Issues

Laws and Protections

Learn about key laws and legal protections that impact people with, or at increased risk of, hereditary cancer; and, how to file a grievance or complaint.

Public Policy Priorities

See what legislative and regulatory policy issues FORCE is actively engaged in, representing the unique needs of people and families affected by hereditary cancer.

Advocacy Archive

Read about the public policy initiatives that FORCE undertook in the past, ensuring that the voice of the hereditary cancer community was heard.

Advocacy Day

Advocacy Day brings the community together to educate Members of Congress about important issues faced by people with or at increased risk of hereditary cancers.

Support

Personalized Guidance

Get matched with a Peer Navigator volunteer who shares a similar experience as you for confidential 1:1 phone/email support and receive a free expert-reviewed resource guide.

Support Meetings and Events

Attend support meetings or learn from experts at webinars and conferences. You can ask questions, share your story or just listen.

Message Boards

Our message boards are available 24/7 and are the easiest way to reach out to others who are facing hereditary cancer.

Private Facebook Group

In this group, you can connect with others who are affected by hereditary cancer. Let’s unite and support each other.

Helpline

Peer volunteers return calls within 48 hours and provide nonjudgmental support and resources in English and Spanish. A Genetic Counselor helpline is also available.

Find Healthcare Providers

Locate medical experts who are knowledgeable in cancer genetics.

Insurance and Paying for Care

Find information on insurance coverage and financial assistance for genetic services, risk management and cancer treatment.

Volunteer

FORCE has opportunities for people of our community to get involved in significant ways to raise awareness, provide support or help promote research of hereditary cancer.

Education

Behind the Headlines (XRAY)

Our XRAY program takes you behind the headlines to bring you reliable information about cancer research-related news and information.

Conference

Joining FORCEs Against Hereditary Cancer is a virtual conference designed to empower individuals and families facing hereditary cancer.

Webinars

Our live and on demand webinars feature presentations by experts on topics of interest and importance to our community.

Blog

Our blogs feature personal perspectives and deep dives into topics of interest to the hereditary cancer community.

Brochures

Order or download our educational materials.

Glossary

Find definitions for commonly used terms.

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Books And Movies (18)

Breast Reconstruction And Going Flat (11)

Cancer Treatment (13)

Decision Making (4)

Diversity And Inclusion (17)

Emotional Health And Well Being (4)

FORCE And FORCE Impact (29)

Family Communication (3)

Fertility And Parenting (2)

Genetic Testing (22)

Health Equity And Disparities (14)

Health And Fitness (4)

Hereditary Cancer - General (14)

Inspirational (27)

Laws, Protections And Public Policy (27)

Men With Mutations (13)

Partnerships (7)

Quality Of Life (3)

Risk Management (9)

Supporting FORCE (4)

Volunteer Spotlight (60)

Advocacy Spotlight: Increasing Our Focus on State Level Issues

June 15, 2022

Advocacy Spotlight: Increasing Our Focus on State Level Issues

Posted in: Laws, Protections And Public Policy, Partnerships
Tags: Cancer Advocacy, Patient Advocacy, Cancer Policy

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The Role of Spirituality in Cancer Care: A Framework for Providers

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National Hereditary Cancer Week 2022

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From Generation to Generation

Patients Weigh In On Review of PARP Inhibitors for Treatment of Ovarian Cancer

October 12, 2017

Patients Weigh In On Review of PARP Inhibitors for Treatment of Ovarian Cancer

Posted in: Laws, Protections And Public Policy, Cancer Treatment
Tags: Ovarian Cancer, PARP Inhibitor, Patient Advocacy

The Civil Rights Challenge to Gene Patenting

April 19, 2022

The Civil Rights Challenge to Gene Patenting

Posted in: Books And Movies
Tags: Hereditary Cancer, Genetic Testing, Gene Patenting, Cancer Advocacy, Health Policy, Genetic Information Nondiscrimination Act, Patient Advocacy

The National Alliance for Hispanic Health Supports Diverse Communities Participation in Health Research Through NIH’s “All of Us Research Program”

July 13, 2022

The National Alliance for Hispanic Health Supports Diverse Communities Participation in Health Research Through NIH’s “All of Us Research Program”

Posted in: Research, Health Equity And Disparities, Diversity And Inclusion, Partnerships, Featured Partner
Tags: Genetic Testing, Patient Advocacy, Health Disparities, Research, Health Equity

Voices of FORCE: Get Off the Sidelines and Help Win the War on HBOC

September 19, 2014

Voices of FORCE: Get Off the Sidelines and Help Win the War on HBOC

Posted in: Research, Voices
Tags: Patient Advocacy, Research Advocacy, Patient Centered Research, ABOUT

September 12, 2014

Voices of FORCE: A Powerful FORCE for Research

Posted in: Research
Tags: Patient Advocacy, Patient Engagement, Patient Centered Research, ABOUT

May 11, 2017

Fueling Patient-Focused Health Care

Posted in: Laws, Protections And Public Policy
Tags: BRCA, Hereditary Cancer, Genetic Testing, BRCA1, BRCA2, HBOC, Personalized Medicine, Health Policy, Patient Advocacy

August 17, 2017

Working with Industry to Increase Patient Engagement in Drug Development

Posted in: Research
Tags: Hereditary Cancer Research, Patient Advocacy, Patient-centered Outcomes, Patient Engagement, Cancer Research, Precision Medicine

August 27, 2018

FORCE Co-Authors Paper on Engaging Patient Advocates in Research

Posted in: Research
Tags: Clinical Trials, Patient Advocacy, Patient Engagement, Cancer Research, Research Advocacy, Patient Centered Research

August 09, 2019

Be Your Own Health Advocate! If Your Doctor Isn’t Asking You These Questions, Ask Them Yourself

Posted in: Hereditary Cancer - General
Tags: Hereditary Cancer, Patient Advocacy