Showing posts with label previvor. Show all posts

Focus On Cancer Year in Review: FORCE and BRCA Previvors

Wednesday, January 2, 2013 · Posted in ,

2012 was an exciting year for the Abramson Cancer Center. We are featuring blogs featured on the Focus On Cancer blog that highlight cancer treatment breakthroughs, coping tips and ideas, education and inspiration. Today, we are highlighting the partnership between Penn and FORCE.

FORCE stands for “Facing Our Risk Cancer Empowered” and was founded by women who have the BRCA gene mutation. This blog discusses what being a previvor is and how FORCE is empowering women.

What is a Previvor?

The term “cancer pre-vivor” arose in 2000 from a challenge on the website, FORCE, which stands for “Facing Our Risk of Cancer Empowered.”

Founded by Sue Friedman in 1999, FORCE acts under the principle that nobody should face hereditary cancer alone.

“FORCE’s goal has always been to include all who have been affected by hereditary cancer,” says Friedman. “This includes those with cancer and those without, those with a known mutation and those with cancer in the family even if no BRCA mutation has been found.

This particular challenge was posed by a FORCE website regular who posted on the site, “I need a label!” She expressed how she had lost her mother to breast cancer at a young age, she lost her breasts, ovaries, and fertility to the risk of cancer, but she did not have cancer. At that time the medical community used the term “unaffected carrier” to describe those who have a gene mutation but have not had cancer.

The term applies from a medical perspective, but can be dismissive for people who face the fears, stress, and difficult choices that accompany an increased risk for cancer,” says Friedman. “As a result, FORCE developed and promoted the term ‘cancer previvor’ for ‘survivor of a predisposition to cancer.’”

Previvors have unique needs from people with cancer such as active surveillance, testing and often need to make treatment decisions based on their risk for inherited cancer.

Now, more than a decade later, as we commemorate National Previvor Day, we celebrate the fact that previvorship has grown into more than a label, but an actual movement of real people who are empowered to take charge of their health.

The goal of Hereditary Breast and Ovarian Cancer (HBOC)Week and Previvor Day is to raise awareness about hereditary cancer. HBOC Week marks the transition between National Ovarian Cancer Awareness Month and National Breast Cancer Awareness Month and recognizes anyone affected by hereditary breast or ovarian cancer, including women and men with BRCA mutations, people with a family history of cancer, breast and ovarian cancer survivors, and previvors, individuals who carry a strong predisposition to cancer but have not developed the disease.

The Basser Research Center at Penn Focuses on BRCA1 and BRCA2

The Basser Research Center for BRCA1 and BRCA 2 supports research on the BRCA1 and BRCA2 genes, harmful forms of which are linked to greatly increased risks of developing breast and ovarian cancer. The Center is named in honor of Mindy Gray’s sister, Faith Basser, who died of ovarian cancer at age 44.

The Basser Research Center was established with a $25 million gift to the University of Pennsylvania from alumni Mindy and Jon Gray.

Emphasizing outreach, prevention, early detection, treatment and survivorship, the Basser Research Center will contribute to all stages of research and clinical care related to BRCA-related cancers.

Cancer Information From a Reliable Source

Thank you for a fantastic 2012. The Focus On Cancer blog is committed to provide people with cancer and their caregivers educated information from a reliable source, the Abramson Cancer Center at Penn Medicine. Please subscribe to our blog to get updates about new cancer treatments at Penn, credible information from cancer experts at Penn, and inspiration from other people with cancer.
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Celebrate Previvor Day: BRCA “Previvor” and Advocate for BRCA

Wednesday, September 26, 2012 · Posted in ,


This week is Hereditary Breast and Ovarian Cancer Week and today is Previvor Day

All week, we are featuring information about hereditary breast and ovarian cancer as well as information about Penn's Basser Research Center for BRCA 1 and BRCA 2.

“I grew up with breast cancer,” says Sandy Cohen. “My grandmother died of breast cancer in her thirties, and consequently, my mother became obsessed with breast cancer, and worried she’d develop the disease herself.”

When Sandy’s mother developed breast cancer at 50, and passed away 4 years later, the cycle continued as Sandy became what she called “obsessed” with breast cancer herself.

She also became determined not to let fear of breast cancer rule her own life, and the lives of her two young children and family.

Sandy with her children.
“Genetic testing for BRCA had just come out,” recalls Sandy. “And I decided to have the genetic testing after a lot of hesitation because I didn’t want to imagine my children going through life without a mother.”

Sandy tested positive for BRCA1, the genetic mutation that increases a woman’s lifetime risk for breast cancer up to 80%, and also carries with in an elevated risk  for ovarian cancer of up to 45%.

“I was shocked,” says Sandy. “I sort of expected it because breast cancer affected my family, but I was still hopeful I wouldn’t have the gene mutation.”

Sandy is a Previvor.

What is a Previvor?

A previvor is a survivor of a predisposition to cancer. Previvors have unique needs from people with cancer such as active surveillance and screening tests and often need to make treatment decisions based on their risk for inherited cancer.

In 2010, Congress declared the first-ever National Hereditary Breast and Ovarian Cancer (HBOC) Week and National Previvor Day.

The goal of HBOC Week and Previvor Day is to raise awareness about hereditary cancer. HBOC Week marks the transition between National Ovarian Cancer Awareness Month and National Breast Cancer Awareness Month and recognizes anyone affected by hereditary breast or ovarian cancer, including women and men with BRCA mutations, people with a family history of cancer, breast and ovarian cancer survivors, and previvors, individuals who carry a strong predisposition to cancer but have not developed the disease.

Sandy is the Philadelphia group founder of the national organizaion, FORCE, which stands for “Facing Our Risk of Cancer Empowered.” She founded the group after she tested positive for BRCA1and wanted to create a resource in the Philadelphia area for other women who were BRCA positive and needs education and support.

Knowing Risk = Empowerment

“When I first found out about my BRCA status, I felt like a walking time bomb,” says Sandy. “Yet, knowing my own risk for breast and ovarian cancer became very empowering for me. I became educated about my options for early treatment and surveillance, and I could take actions to lower my risk.”

Sandy underwent a double mastectomy, completely removing and reconstructing her breasts, which lowered her risk of breast cancer by approximately 90%. She also underwent an oophorectomy, removal of her ovaries, which further reduced her risk of breast cancer and lowered her risk of ovarian cancer by approximately 70%.

“These decisions were not easy for me, and they are not easy for any woman,” says Sandy. “But today, being a Previvor is a lucky status for me. I feel lucky that I could make informed decisions that could lower my risk for breast and ovarian cancer.”

The Basser Research Center at Penn Focuses on BRCA1 and BRCA2

The Basser Research Center for BRCA1 and BRCA2 supports research on the BRCA1 and BRCA2 genes, harmful forms of which are linked to greatly increased risks of developing breast and ovarian cancer. The Center is named in honor of Mindy Gray’s sister, Faith Basser, who died of ovarian cancer at age 44.

The Basser Research Center was established with a $25 million gift to the University of Pennsylvania from alumni Mindy and Jon Gray.

Emphasizing outreach, prevention, early detection, treatment and survivorship, the Basser Research Center will contribute to all stages of research and clinical care relevant to BRCA-related cancers.

Learn more about the Basser Research Center.

Read more

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What is a Previvor?

Tuesday, September 25, 2012 · Posted in ,


This week is Hereditary Breast and Ovarian Cancer Week. To celebrate and bring awareness, we will be featuring information about hereditary breast and ovarian cancer risk, the Basser Research Center for BRCA1 and BRCA2 and stories from "previvors."

The term “cancer pre-vivor” arose in 2000 from a challenge on the website, FORCE, which stands for “Facing Our Risk of Cancer Empowered.”

Founded by Sue Friedman in 1999, FORCE acts under the principle that nobody should face hereditary cancer alone.

“FORCE’s goal has always been to include all who have been affected by hereditary cancer,” says Friedman. “This includes those with cancer and those without, those with a known mutation and those with cancer in the family even if no BRCA mutation has been found.

This particular challenge was posed by a FORCE website regular who posted on the site, “I need a label!” She expressed how she had lost her mother to breast cancer at a young age, she lost her breasts, ovaries, and fertility to the risk of cancer, but she did not have cancer. At that time the medical community used the term “unaffected carrier” to describe those who have a gene mutation but have not had cancer.

The term applies from a medical perspective, but can be dismissive for people who face the fears, stress, and difficult choices that accompany an increased risk for cancer,” says Friedman. “As a result, FORCE developed and promoted the term ‘cancer previvor’ for ‘survivor of a predisposition to cancer.’”

Previvors have unique needs from people with cancer such as active surveillance, testing and often need to make treatment decisions based on their risk for inherited cancer.

Now, more than a decade later, as we commemorate National Previvor Day, we celebrate the fact that previvorship has grown into more than a label, but an actual movement of real people who are empowered to take charge of their health.

The goal of Hereditary Breast and Ovarian Cancer (HBOC)Week and Previvor Day is to raise awareness about hereditary cancer. HBOC Week marks the transition between National Ovarian Cancer Awareness Month and National Breast Cancer Awareness Month and recognizes anyone affected by hereditary breast or ovarian cancer, including women and men with BRCA mutations, people with a family history of cancer, breast and ovarian cancer survivors, and previvors, individuals who carry a strong predisposition to cancer but have not developed the disease.

The Basser Research Center at Penn Focuses on BRCA1 and BRCA2

The Basser Research Center for BRCA1 and BRCA 2 supports research on the BRCA1 and BRCA2 genes, harmful forms of which are linked to greatly increased risks of developing breast and ovarian cancer. The Center is named in honor of Mindy Gray’s sister, Faith Basser, who died of ovarian cancer at age 44.

The Basser Research Center was established with a $25 million gift to the University of Pennsylvania from alumni Mindy and Jon Gray.

Emphasizing outreach, prevention, early detection, treatment and survivorship, the Basser Research Center will contribute to all stages of research and clinical care related to BRCA-related cancers.

Learn more about the Basser Research Center.
Read more

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