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Miss America contestant Allyn Rose plans to undergo a double mastectomy now that her participation in the 2013 Miss America competition is over. The 24-year-old says her mother battled breast cancer as a 27-year-old, and then again at 47. Her mother eventually died from breast cancer, as did her grandmother and aunt. Rose’s story highlights the challenge that women face in considering hereditary cancer risk.

Increasingly, women at high risk for breast cancer are choosing prophylactic mastectomy to greatly reduce their chance of getting breast cancer. While prophylactic mastectomy stories often make the front page, many women at increased risk for breast cancer choose other methods of managing their risk like enhanced breast cancer screening or risk-reducing medications. Jessica Long, CGC, a genetic counselor at Penn’s Basser Research Center for BRCA explains that “this is generally a very personal decision for each woman, even within the same family.”

Cancer Genetic Counseling at Penn

Cancer genetic counseling is an extremely important step in defining one’s cancer risk and considering interventions to address it. Genetic counseling with genetic counselors can help people who are concerned about their family history of cancer by

• Determining if genetic testing is appropriate for a family
• Interpreting genetic test results, since mutations in different cancer genes confer different risks
• Estimating cancer risks based on family history if no gene mutations can be identified

If a gene mutation is identified in a family, then family members can undergo genetic testing for that mutation to learn if they have inherited the increased cancer risk or not. For example, a mother with a BRCA1 mutation has a 50% chance of passing it on to each child. Despite the family history, individuals who do not inherit the mutation are typically at average risk for cancer.

Genetic counselors can also provide information on cancer risk by decade of life, information that can help women decide not just if but when to consider prophylactic surgery or other measures to manage cancer risk. For example, women with mutations in BRCA1 or BRCA2 have up to a 70 to 80% lifetime risk of breast cancer, but the risk for a BRCA carrier in her 20s to develop breast cancer by age 30 is about 1 to 2%.

Penn Medicine’s Cancer Risk Evaluation Program provides consultation with certified genetic counselors and medical oncologists. The Basser Research Center for BRCA within Penn’s Abramson Cancer Center was founded in May of 2012 to promote research on the BRCA1 and BRCA2 genes harmful forms of which cause hereditary breast and ovarian cancer syndrome.

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 Basser Research Center for BRCA.

A $25 million gift to the University of Pennsylvania from alumni Mindy and Jon Gray will establish a center focused on the treatment and prevention of cancers associated with hereditary BRCA mutations.

Basser Research Center for BRCA 1 and 2

A $25 million gift to the University of Pennsylvania from alumni Mindy and Jon Gray will establish a center focused on the treatment and prevention of cancers associated with hereditary BRCA mutations.

The Basser Research Center — BRC for BRCA — will support 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.

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.

“We hope that the Basser Research Center will eliminate BRCA-related cancers and, in doing so, provide a road map for curing other genetic diseases,” Mindy and Jon Gray said. “We also want to make sure that families have a center dedicated to helping them with the complex issues arising from a BRCA diagnosis. As Penn graduates, we are fortunate that our alma mater has the world-class medical facilities and gifted researchers essential for this mission.”

The Center will be located within Penn’s Abramson Cancer Center at the Perelman School of Medicine. The gift will create an endowed professorship in the field of oncology to be known as the Basser Professorship, recruit additional faculty, enhance core technologies such as bioinformatics and DNA vaccine production, launch an annual lectureship and establish the Basser Prize to honor cutting-edge research.

The Grays’ gift will support research with a particular focus on interdisciplinary work and an acceleration of bench-to-bedside implementation of scientific findings.

Susan Domchek, associate professor of medical oncology and current director of the MacDonald Women’s Cancer Risk Evaluation Center at the Perelman School of Medicine, will serve as the founding executive director of the Basser Research Center and will lead its strategic direction.

Read the full press release about the Basser Research Center.

Learn more about the Basser Research Center.

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.

More than 400 patients, friends and faculty of the Abramson Cancer Center celebrated the transformational gift from Jon and Mindy Gray to establish the Basser Research Center for BRCA in New York and Philadelphia this fall.

The Basser Center will focus on prevention and treatment options for those with a BRCA 1 or 2 mutation and will provide a place for people to discuss their options and participate in research studies.

From left:  Chi Van Dang, M.D., Ph.D., Susan Domchek, M.D., Jon Gray and Mindy Basser Gray, Amy Gutmann, Ph.D., and J. Larry Jameson, M.D., Ph.D.

View more photos from the Philadelphia and New York events on Penn Medicine's Facebook page.

About the Basser Research Center

A $25 million gift to the University of Pennsylvania from alumni Mindy and Jon Gray will establish a center focused on the treatment and prevention of cancers associated with hereditary BRCA mutations.

The Basser Research Center — BRC for BRCA — will support 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.

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.

“We hope that the Basser Research Center will eliminate BRCA-related cancers and, in doing so, provide a road map for curing other genetic diseases,” Mindy and Jon Gray said. “We also want to make sure that families have a center dedicated to helping them with the complex issues arising from a BRCA diagnosis. As Penn graduates, we are fortunate that our alma mater has the world-class medical facilities and gifted researchers essential for this mission.”

The Center will be located within Penn’s Abramson Cancer Center at the Perelman School of Medicine. The gift will create an endowed professorship in the field of oncology to be known as the Basser Professorship, recruit additional faculty, enhance core technologies such as bioinformatics and DNA vaccine production, launch an annual lectureship and establish the Basser Prize to honor cutting-edge research.

The Grays’ gift will support research with a particular focus on interdisciplinary work and an acceleration of bench-to-bedside implementation of scientific findings.

Susan Domchek, associate professor of medical oncology and current director of the MacDonald Women’s Cancer Risk Evaluation Center at the Perelman School of Medicine, will serve as the founding executive director of the Basser Research Center and will lead its strategic direction.

This week is Hereditary Breast and Ovarian Cancer Week. The Basser Center for BRCA Research is learning new ways to improve options for those with BRCA gene mutations that can elevate risk for ovarian and breast cancer. 

Join Penn Medicine on October 8 to celebrate the $25 million gift from Mindy and Jon Gray that established the Basser Research Center for BRCA.

What are BRCA1 and BRCA2?

BRCA1 and BRCA2 stand for breast cancer 1 and breast cancer 2 genes. The BRCA1 and BRCA2 genes are present in all individuals. Everyone has two copies of each of these genes - one from each parent.

A gene mutation is like a spelling error in the genetic code of a gene. Those who have a gene mutation in either the BRCA1 or BRCA 2 gene are at higher than average risk for developing certain cancers.

The BRCA1 and BRCA2 genes are responsible for the repair of certain types of DNA errors that may occur each time a human cell makes a copy of itself. Without a gene mutation, functional BRCA1 and BRCA2 genes help ensure the stability of cell's genetic material, or DNA, and help prevent uncontrolled cell growth.

Having an inherited gene mutation in BRCA1 or BRCA2 does not mean a person is guaranteed to develop cancer, but the chances are significantly higher than for someone who does not have a gene mutation.

Women and men who choose to learn if they have a gene mutation may make other health care decisions based on that knowledge. For example, someone with a BRCA1 or BRCA2 mutation may choose specialized follow-up care that may dramatically decrease their chances of developing certain cancers.

About the Basser Research Center for BRCA and BRCA

A $25 million gift to the University of Pennsylvania from alumni Mindy and Jon Gray has established The Basser Research Center for BRCA, a center focused solely on the prevention and treatment of cancers that are associated with heritable BRCA mutations.

The Basser Research Center for BRCA is part of Penn's Abramson Cancer Center. Basser physicians and researchers from the Perelman School of Medicine at the center support research on the BRCA1 and BRCA2 genes, mutated forms of which are associated with greatly increased risks of breast and ovarian cancer development. The center is named in honor of Mindy Gray's family, the Bassers.

The goal is to learn from today's patients to decrease risk among BRCA carriers and to impact care for generations of cancer patients to come.

The Basser Research Center infuses powerful resources to support cancer care and research at every stage of the cancer diagnosis:

• Communication
• Outreach & Risk Assessment
• Prevention
• Early Detection
• Treatment
• Survivorship

Celebrate With Penn Medicine

This celebration is open to the public, and registration is encouraged.

The event will include welcoming remarks from University of Pennsylvania President Amy Gutmann, and Penn Medicine leadership, videos about the center, and a celebratory reception.

Whether you are a donor, friend of the Abramson Cancer Center, faculty, BRCA carrier, or are at risk for the BRCA mutation, please join us for this evening's event.

Date: October 8, 2012
Time: 6 to 7:30 pm ET
Location: Perelman Center for Advanced Medicine
Register: www.pennmedicine.org/basserphila

Learn more about the Basser Research Center for BRCA.

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.

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.

This week is Hereditary Breast and Ovarian Cancer (HBOC) Risk Awareness Week.

The goal of HBOC Week 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.

Women with breast cancer or ovarian cancer may want to ask their physicians if their cancer has a genetic link.

The BRCA1 and BRCA2 genes, breast cancer susceptibility gene 1 and breast cancer susceptibility gene 2, are genes with several roles. One important role is to repair certain types of DNA errors that may occur each time a cell makes a copy of itself. Without a gene mutation, functional BRCA1 and BRCA2 genes help ensure the stability of the cell’s genetic material, or DNA, and help prevent uncontrolled cell growth. Mutations of these genes have been linked to an increased genetic risk for multiple forms of cancer, but most notably breast and ovarian cancer.

The lifetime risk of developing breast and/or ovarian cancer is greatly increased for women who inherit a harmful mutation in BRCA1 or BRCA2. These women have an increased risk of developing breast and/or ovarian cancer at an earlier than average age and may have multiple, close family members who have been diagnosed with these conditions.

Mutations in BRCA1 or BRCA2 may also increase the risk for pancreatic cancer and melanoma in both women and men. Men also have a higher chance to develop an earlier onset prostate cancer if a BRCA2 gene mutation is present. Men with BRCA1 or BRCA2 mutations also have an increased risk of male breast cancer.

Should you get tested for a BRCA gene mutation?

In a family with a history of breast and/or ovarian cancer, the first step may be to test a family member who has had breast or ovarian cancer. If that person is found to have a harmful BRCA1 or BRCA2 mutation, then other family members can be tested to see if they also have the mutation.

The Mariann and Robert MacDonald Women's Cancer Risk Evaluation Center provides genetic counseling to help people identify their genetic risk of breast cancer, ovarian cancer and other cancers.

The center assists patients with cancer as well as those individuals who may be at an increased risk for cancer.

The program is designed to:

• Help people understand their genetic risk of breast cancer, ovarian cancer and other cancers.
• Obtain and assess detailed family history information for possible inherited cancer conditions.
• Provide expert genetic counseling and the option of genetic testing.
• Arrange genetic testing and provide consultation regarding results.
• Provide a clinical breast examination.
• Provide tailored medical recommendations.
• Review outside genetic testing results and make recommendations for follow-up.
• Coordinate screening and long-term, follow-up care for those with a known inherited genetic risk for cancer.
• Review medical history and lifestyle risk factors.
• Provide a written summary of a genetic consultation.
• Evaluate eligibility for participation in research studies.

The Mariann and Robert MacDonald Women's Cancer Risk Evaluation Center also provides information for those who have been diagnosed with cancer and are interested in learning about the role of genetics in their disease.

Some people are interested in obtaining this information for the benefit of their siblings, children and grandchildren. The center also holds education and support programs periodically throughout the year for individuals at high risk for developing cancer.

*Some of this information was adapted from the National Cancer Institute.

Watch the Abramson Cancer Center’s Focus On Your Risk of Breast and Ovarian Cancer Conference to learn more about cancer genetics and risk assessment.

The Basser Research Center to Focus on BRCA1 and BRCA2

The Basser Research Center — BRC for BRCA — 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.

Jill Stopfer, MS, is a certified genetic counselor at the Mariann and Robert MacDonald Women’s Cancer Risk Evaluation Center at Penn’s Abramson Cancer Center. In this blog post, she explained genetic risk due to the BRCA1 or BRCA2 genes.

A $25 million gift to the University of Pennsylvania from alumni Mindy and Jon Gray will establish a center focused on the treatment and prevention of cancers associated with hereditary BRCA mutations.

The Basser Research Center — BRC for BRCA — will support 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.

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.

“We hope that the Basser Research Center will eliminate BRCA-related cancers and, in doing so, provide a road map for curing other genetic diseases,” Mindy and Jon Gray said. “We also want to make sure that families have a center dedicated to helping them with the complex issues arising from a BRCA diagnosis. As Penn graduates, we are fortunate that our alma mater has the world-class medical facilities and gifted researchers essential for this mission.”

The Center will be located within Penn’s Abramson Cancer Center at the Perelman School of Medicine. The gift will create an endowed professorship in the field of oncology to be known as the Basser Professorship, recruit additional faculty, enhance core technologies such as bioinformatics and DNA vaccine production, launch an annual lectureship and establish the Basser Prize to honor cutting-edge research.

The Grays’ gift will support research with a particular focus on interdisciplinary work and an acceleration of bench-to-bedside implementation of scientific findings.

Susan Domchek, associate professor of medical oncology and current director of the MacDonald Women’s Cancer Risk Evaluation Center at the Perelman School of Medicine, will serve as the founding executive director of the Basser Research Center and will lead its strategic direction.

Read the full press release about the Basser Research Center.

Learn more about the Basser Research Center.