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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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Archive for 2016

December 31, 2016

Happy New Year HBOC Community! Happy 18th Birthday, FORCE!

Note: This post, which originally was published on 1/1/15 has been updated and reposted on 12/31/16. New Year’s is always a nostalgic time for me. Tonight at just a few seconds after the stroke of midnight, FORCE and the community we have built will turn 18! In 1999, I founded FORCE, not because I made … + read more

December 22, 2016

Voices of FORCE: My journey with cancer: from witness to young previvor

by Alexandria Groves My journey “with cancer” began when my mom was diagnosed with breast cancer at the age of 32. I’m the oldest of three daughters: I was seven at the time, Kiersten was five, and Victoria was one. Why did my “journey with cancer” begin back then? Because since then, breast cancer and … + read more

December 15, 2016

Paradigm shift: A journalist and survivor tackles the new normal of news

By Amy Wu Caught amidst a tsunami of daily news stories, posts and news alerts – Facebook, Twitter, Buzzfeed, NPR, The New York Times, VICE, CNN, The Guardian and The Washington Post, where do I start? I click, I swipe, scroll and scan. Since the advent of the smartphone and the ease of the wireless … + 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

December 6, 2016

What Does the Recent Election Mean For the HBOC Community?

by Lisa Schlager The results of the 2016 election and the pending change in administration have triggered renewed focus on the future of healthcare. FORCE released an official statement on the election’s impact on the HBOC community and I hope to address additional issues here. The hereditary cancer community has good reason to be concerned. … + read more

November 17, 2016

Results from the KNOW MORE Ovarian Cancer Survey: Your Comments

by Sue Friedman FORCE’s KNOW MORE campaign helps women diagnosed with ovarian, fallopian tube, or primary peritoneal cancers make informed decisions about genetic counseling and testing for inherited gene mutations. We launched a survey, which was completed by over 1,600 women with ovarian cancer. This blog continues our series on the survey results. We received over … + read more

November 14, 2016

Voices of FORCE: A BRCA Mutation is a Factor in Pancreatic Cancer

By Rona Greenberg Hereditary breast and ovarian cancer is part of my family history. My grandmother, Rebecca, for whom I am named, died from breast/ovarian cancer in1934; my mother was ten years old. My mother died from the same cancer in 1967; I was nineteen years old with three younger sisters. In 1997, I was … + 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

October 12, 2016

Guest Blog: From Previvor to Survivor

By Angela Schmidt Fishbaugh, M.Ed., CET II I tested positive in 2009 for the BRCA1 deleterious mutated gene. Back then, at the age of 41 I became a previvor. I made the decision to undergo a prophylactic bilateral mastectomy followed by a total hysterectomy. I had both surgeries within eight weeks of one another. At that … + read more

September 30, 2016

HBOC Week Special: Inherited Mutations in BRCA1/2 and Related Genes More Common Than Expected in Men with Advanced Prostate Cancer

Guest blog by Heather H. Cheng, MD, PhD Researchers have long been aware that prostate cancer carries a substantial familial risk. New data (Robinson, et al Cell 2015) from the Stand Up To Cancer-Prostate Cancer Foundation International Dream Team collaborative group examined the genetic sequence of 150 tumors from men with advanced, hormone-resistant, metastatic prostate … + read more

September 28, 2016

Previvor: Past, Present, & Future

Note: In honor of National Previvor Day, I’ve updated this blog post, which was initially published in 2008 but is still relevant today.  by Sue Friedman Use of the term “previvor” has become common, which, in my opinion is good for our community. Since popularization of the term increases the chance that its meaning and … + read more

September 27, 2016

Ovarian Cancer Awareness Month: Highlighting the Gaps and Priorities Raised by the Institute of Medicine’s Report on Ovarian Cancer Research

by Lisa Rezende and Alexandria Groves Over 20,000 women in the United States are diagnosed with ovarian cancer each year. Women with mutations in BRCA1, BRCA2, and the genes associated with Lynch syndrome are at a much greater lifetime risk of ovarian cancer compared to women in the average population. Recent studies show that women … + read more

September 19, 2016

How the XRAYS Program Can Help You Understand Ovarian Cancer

Over 20,000 women each year are diagnosed with ovarian cancer, affecting both those diagnosed and their loved ones. An integral aspect of our mission for the XRAYS (eXamining Relevance of Articles for Young Survivors) program is to inform our readers, specifically young survivors, with timely and accurate information to help them make sense of the … + read more

September 6, 2016

Ovarian Cancer Survivor Survey Results: Education is Key to Informed Decision-making

FORCE’s KNOW MORE campaign helps women diagnosed with ovarian, fallopian tube, or primary peritoneal cancer make informed decisions about genetic counseling and testing for inherited mutations. To better understand their information needs, we launched a survey for women with ovarian cancer. Over 1,600 women completed our survey. This blog continues our series on survey results. How … + read more

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