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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 surgery’

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

November 20, 2017

Why is Mommy Having Surgery, She Looks Ok to Me

By: Heather Barnard I wish the circumstances were different, but the fact of the matter is, I come from a long line of women with breast cancer. My mother, grandmother and great-grandmother all suffered from it. While my grandmother was able to beat the odds way back in 1966, my own mother was not; she passed … + read more

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 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 12, 2017

Update on Hormone Therapy for Previvors

by Alexandria Groves and Lisa Rezende, PhD National guidelines recommend that women with mutations in BRCA have risk-reducing removal of their ovaries and tubes, (also known as salpingo-oophorectomy or RRSO) either between the ages of 35-40 or after they are done having children. RRSO greatly reduces the risk of ovarian, fallopian tube, and peritoneal cancer, … + 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

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 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

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

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 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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