FORCE Blog

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 ‘previvor’

March 31, 2015

Angelina Jolie and Patient-Centered Outcomes Research

Kudos to Angelina Jolie Pitt for sharing her BRCA status and news of her prophylactic surgeries with the world, soon after her risk-reducing mastectomy two years ago and again last week when she wrote about her bilateral salpingo-oophorectomy. Her two op-eds brought an unprecedented level of awareness about hereditary cancer, making words like “mutation” and … + read more

March 5, 2015

Regulating the Next Generation of Genetic Tests

Gene sequencing – also known as genetic testing – is the process scientists use to analyze DNA in search of mutations and variations in an effort to discover more about the connection between genes and traits, health and disease. Since the discovery of BRCA 1 in 1994, the sequencing of genes to find mutations has … + read more

December 15, 2014

Education, Medical Decisions, and Regret

Note: This article was originally posted in 2014 and updated on 05/12/16. An AARP article that contained an interview with rock stars Sheryl Crow and Melissa Etheridge brought awareness to the individual and personal nature of genetic testing, hereditary breast and ovarian cancer (HBOC), and the medical challenges that accompany inherited breast cancer. The article also led to … + read more

February 21, 2014

FORCE 15: Reasons to Join FORCEs and Attend Our 8th Annual Conference

Need a reason to attend this year’s Joining FORCEs Conference? Here are 15 good ones: It’s the largest annual gathering by and for the hereditary cancer community.  Be a part of this landmark event. We make the latest science understandable and accessible. Hear experts clearly explain the science of hereditary cancer and make the latest … + read more

February 1, 2014

Patient-Centered Outcomes Research Institute (PCORI): Research Done Differently

What is PCORI? The Patient-Centered Outcomes Research Institute (PCORI) is a new government-supported agency that approaches medical research with a focus on the patient to improve health outcomes. Aiming to answer medical questions that are most important to patients and collecting data from “real world settings,” this differs from traditional research, which typically occurs at … + read more

October 2, 2013

Meeting the Challenges to Hereditary Cancer Research

This week is National HBOC week and today is National Previvor Day; personally this season is marked by equal doses of reflection, recollection, gratitude, and action. Much progress has been made in cancer research in the 15 years since I learned about my mutation and founded FORCE. Perhaps most exciting are the advances in “personalized … + read more

August 22, 2013

Hereditary Cancer Impact Is More Than Skin Deep

Articles about Angelina Jolie’s revelation that she underwent genetic testing and prophylactic mastectomy with reconstruction often emphasize her as one of the world’s most beautiful women, who is still beautiful after all that she has endured. This message can be reassuring; by going public, Ms. Jolie put a more positive spin on the stigmatizing effect … + read more

June 21, 2013

Thoughts on Turning 50: Recovery

The first time I met with my running coach, she had me run a quarter mile as fast as I could. As I neared the finish, I remember feeling like I was drowning. As soon as I finished she had me slow to a jog without stopping and timed me as I continued this very … + read more

June 6, 2013

Increased Awareness Leads to Accelerated Research

About a million people in the United States carry a BRCA mutation; less than 10% of them are aware of their elevated cancer threat. Recent media coverage of Angelina Jolie’s BRCA status and risk-reducing double mastectomy has brought unprecedented attention to these issues. These reports will narrow the awareness gap while erasing stigmas that are … + read more

May 24, 2013

Maximizing Access to BRCA Testing by Involving Genetics Experts

Note: The below is an updated version of a post in 2008 right after the documentary In the Family was released, and actress Christina Applegate announced she had a BRCA 1 mutation. Five years later, this post is more relevant than ever.  As the dust clears since Angelina Jolie went public with her BRCA status, the impact … + read more

May 20, 2013

Every Story Matters

Since Angelina Jolie recently shared her personal experience with genetic testing and prophylactic surgery in the New York Times, public awareness of hereditary cancer is at an all-time high. The media surrounding Ms. Jolie’s revelations has also provided unparalleled opportunities for members of the HBOC community to share their personal accounts as well. How did … + read more

March 22, 2013

Gene Discovery, Patents, and the Community

Recently a dear friend sent me a link to an article in the February 1996 issue of Nature Medicine. The article by journalist Adam Marcus covered a media event and panel of women’s rights advocates expressing concern about Myriad’s impending patenting of the BRCA1 gene. Panelists declared unregulated genetic testing to be the coming century’s … + read more

February 24, 2013

Hopeful Progress in Ovarian Cancer Prevention Research

In 2008 FORCE conducted a survey to learn about research priorities for the HBOC community. We learned that women want better methods for ovarian cancer detection and prevention for ourselves, our children, and future generations. For this reason, we have worked closely with researchers exploring new options and we have carefully followed and shared with … + read more

January 17, 2013

Drawing Attention To High-risk Screening

Reports are everywhere in the media about which celebrities underwent prophylactic mastectomy, the difficulty of their decision, and why these women made the choice. These media reports can be helpful to our community as they raise awareness of hereditary cancer risk and risk-management and remove the stigma of mastectomy. However, given the media focus on … + read more

December 3, 2012

Weighing the Risks and Benefits of Screening Mammography

Two recent research articles have questioned the value of mammograms and opened up a dialogue about possible benefits and harms of screening for breast cancer. One study looked at mammography in the general population and the other in high-risk young women. Both studies raise interesting concerns, but neither provides the definitive answers needed to dismiss … + read more

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Join a Local Group

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

FORCE:Facing Our Risk of Cancer Empowered