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This blog will cover topics of interest that affect our community. Unless otherwise stated, the blog articles will be written by Sue Friedman, Executive Director of FORCE.

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Posts Tagged ‘PALB2’

November 20, 2017

We All Love a Good Book or Movie

Some books and movies make us think.  Some make us laugh or cry. Some are educational and others are just plain fun.  And, then some do all of the above.  Below is a list of personal memoirs, self-help and reference books created to share information and stories of those who have experienced hereditary cancer. You … + read more

October 23, 2017

No Longer Alone: 1000 People Benefit from Personalized Cancer Risk Support

by Sandy Cohen Unfortunately, my story is not that uncommon. I’m a motherless daughter. I lost my mom to breast cancer when I was 26 years old. And she lost her mom to the disease before she graduated high school. This all occurred before the BRCA1 mutation was even discovered. Today, thanks to FORCE’s programs, … + read more

August 22, 2017

100th XRAYS: 5 Lessons We Have Learned

by Lisa Rezende, PhD and Julie Huynh, MS Today we celebrate the publication of our 100th XRAYS review. It’s amazing to think how the program we developed over the past three years has grown to serve over 70,000 people affected by breast cancer. We knew the need was there. We saw how catchy headlines like … + read more

February 15, 2017

Guest Blog: Join FORCEs at our 2017 HBOC Conference!

by guest blogger, Jane E. Herman When I boarded the flight for my first trip to Orlando in June 2011, my goal was not to hug Mickey Mouse or visit Cinderella’s Castle. Rather, my destination was the sixth annual Joining FORCEs Conference. Not knowing anyone who would be in attendance, I was – not unexpectedly … + read more

January 26, 2017

Flawed Research and Reporting on the “Angelina Effect” Could Threaten Access to HBOC Care

by Lisa Schlager, Lisa Rezende, PhD and Sue Friedman “Angeline Effect” Angelina Jolie’s May 2013 New York Times editorial “My Medical Choice,” which detailed her decision to have a double mastectomy because she carries a BRCA1 mutation brought unprecedented attention to hereditary cancer and BRCA genetic testing. This “Angelina Effect” created an avalanche of public … + read more

December 8, 2016

Tips for Sharing the Gift of Knowledge with Relatives

by Sue Friedman Members of our community who have already had genetic testing often ask for advice on how to speak about it to their relatives. Some common barriers to testing that we hear voiced by people are: concern over the cost of testing access to genetics experts family communication challenges With the holidays coming, … + read more

November 1, 2016

Learn About Hereditary Pancreatic Cancer

by Lisa Rezende, PhD November is Pancreatic Cancer Awareness Month. FORCE wants to raise awareness of the risk of pancreatic cancer in the hereditary cancer community. Pancreatic cancer is rare but BRCA carriers have a high risk, up to 5% compared to the 1.5% for the general population. Between BRCA carriers, the risk is higher … + read more

October 25, 2016

Guest Blog: Genetic Variants of Uncertain Significance

by Nancy Ledbetter Early on in my genetics nursing career, I remember explaining the possibility of a variant of uncertain significance (VUS) to a patient, who laughed and said, “Variant of uncertain significance? That sounds like something out of Monty Python!” I had to admit she had a good point. It sounds like a ridiculous … + read more

July 5, 2016

Cancer Screening Guideline Loopholes and Confusion Jeopardize Coverage of Services: Part II of Access to Care Series

by Lisa Schlager Over 2 million women in the U.S. are at high risk for breast cancer due to family history. Additionally, nearly a million Americans carry an inherited BRCA mutation and a number of other genetic mutations have also been linked to increased risk of breast, ovarian and other cancers. Several organizations develop cancer … + read more

June 17, 2016

National Task Force Guideline Gaps Hinder Access to Genetic Testing

by Lisa Schlager Nearly a million Americans carry an inherited BRCA mutation associated with hereditary breast, ovarian cancer, and related cancers (HBOC) and it is estimated that 2.3 million women in the U.S. are at high risk for breast cancer due to family history. A number of other genetic mutations have also been linked to … + read more

June 2, 2016

Results from the KNOW MORE Survey: Genetic Counseling and Testing in Women with Different Types of Ovarian Cancer

KNOW MORE is a campaign designed by FORCE to help women diagnosed with ovarian, fallopian tube, or primary peritoneal cancers make informed decisions about genetic counseling and testing for inherited gene mutations. We kicked off the effort by launching a brief survey to better understand how women with ovarian and related cancers make decisions about genetic … + read more

May 27, 2016

Blog: What Do the New Guidelines from the National Comprehensive Cancer Network Mean For You?

by Lisa Rezende, PhD People with hereditary cancer face many decisions, such as whether or not to have genetic testing, choosing the best type and frequency of cancer screening, and whether or not to manage cancer risk through surgery. Health care providers look to national guidelines to give their patients advice as they make these … + read more

May 19, 2016

Updates in Research on Treating Hereditary Cancers

Note: This post which was originally published 08/4/15 was just updated on 05/19/16. In December 2014, the FDA approved the first targeted therapy for people with BRCA mutations. Lynparza, a type of medication known as a PARP inhibitor, was approved for women with a BRCA mutation to treat advanced ovarian, fallopian tube, or primary peritoneal cancer that has progressed after … + read more

April 25, 2016

Receive Personalized Resources and Support Quickly and Easily Through FORCE’s New Peer Navigation Program

by Wendy Demming, FORCE Peer Navigator Volunteer I wanted to be a Peer Navigator because it is important for me to help others who are going through an overwhelming diagnosis. I remember being desperate for credible information, and wanting to talk to others who had been in a similar situation. I was so grateful when … + read more

March 17, 2016

Ovarian Cancer Survivors with a Negative Genetic Test Result in the Past May Benefit from Additional Genetic Counseling/Testing

KNOW MORE is a new campaign designed by FORCE to inform every woman diagnosed with ovarian, fallopian tube, and primary peritoneal cancer about national guidelines on genetic counseling and testing for inherited gene mutations. We kicked off the campaign by launching a brief survey to better understand how women with ovarian cancer make decisions around … + read more

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FORCE has outreach groups throughout the United States and in Essex, United Kingdom that meet periodically to offer peer support, and share resources.

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