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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 ‘prophylactic mastectomy’

May 14, 2017

The Lights of May

Special note: In honor of Mother’s Day 2017, and my son, Beau’s graduation which is next week, I’m recycling this post that I wrote in 2012. This post is as relevant as when I wrote it 5 years ago. I have yet to see a firefly in Tampa but tonight I will look extra hard. … + read more

March 1, 2017

Making Postmastectomy Decisions: The Right Input is Critical

Note: This is part 3 of a 3-part series related to our recent XRAYS review on Roni Caryn Rabin’s New York Times piece, “‘Going Flat’ After Breast Cancer.” In part 1 of the series, FORCE volunteer, Robin Karlin discusses her decisions after mastectomy, and her feelings post-reconstruction. In part 2, Sue Friedman talks about the affect of … + read more

February 23, 2017

Post-Reconstruction Thoughts on “Going Flat”

Note: This is part 1 of a 3-part series related to our recent XRAYS review on Roni Caryn Rabin’s New York Times piece “‘Going Flat’ After Breast Cancer.” by Robin Karlin Roni Caryn Rabin’s New York Times piece, “‘Going Flat’ After Breast Cancer,” brings much-needed awareness to the option of skipping reconstruction after mastectomies for breast … + 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

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

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

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

January 29, 2016

Mammogram Update: Latest Screening Guidelines Finalized But Not Implemented

by Lisa Schlager Few health issues have stirred as much debate as the guidelines surrounding screening mammograms for average-risk women. Recent changes in national guidelines threatened access to mammograms for women age 40-49. FORCE worked together with other groups to pass laws that assure continued access to mammograms for women in this age group. At … + read more

January 8, 2016

Value in Cancer Care: Including Consumers in the Dialogue

by Lisa Schlager, Vice President of Policy and Community Affairs Value and access to appropriate health care is of vital importance to patients and their families, particularly as cancer diagnoses continue to rise—up more than 20 percent in the past decade—and health care costs steadily increase. In this environment, more attention is being paid to … + read more

June 2, 2015

An Advocacy Win for Cancer Survivors Facing HBOC

  We frequently mobilize our community to challenge health policy barriers to medical care. It’s always gratifying when we are able to report wins, when FORCE organized and amplified your voices to affect positive change. Clarification of guidelines paves the way for eligible cancer survivors to receive BRCA counseling and testing at no cost Guidelines … + read more

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

February 3, 2015

Spreading HBOC Advocacy to Japan

Last month I had the honor of giving two talks at a conference organized by the Japanese HBOC Consortium in Tokyo: one for patients and the other for health care providers. Most people in Japan have little input into their health care decisions and do not question their doctors’ recommendations. The conference organizers hoped that … + 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

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