"It Seemed Like Breast Cancer Was Always There" - A Previvor Shares Her Story

Photo courtesy of Katie Bradford Osborne

Pamela Badolato lives in Berwyn with her husband, 4 year old son, 2 year old twins, and newborn baby. Despite having four children aged 4 and under, she loves spontaneous adventures and having new experiences with them. Pamela is the Associate Publisher of Main Line Parent and Philadelphia Family Magazines.
 

I remember sitting in our kitchen, and hearing my mom trying to explain to my sister and I that she found a lump in her breast. At 9 years old, breast was still a word that made me giggle- yet I knew this conversation was no laughing matter. Just 10 months prior my great aunt was diagnosed with breast cancer, too. And I knew that her mother, my great grandmother had died of breast cancer. From then on, it seemed like breast cancer was always there- someone my mother worked with, the sister of a family friend, etc. Maybe we kept finding the breast cancer survivors… or maybe somehow they kept finding us.

Nearly three years ago I made the decision to get tested to see if I carry the same genetic mutation that my mother tested positive for since we have a strong family history of breast cancer, and my mother was just a few years past being diagnosed a second time. I never considered that the test results would be negative, not because I’m a doom and gloom person but because I just felt it. It’s like I could feel the mutation coursing through the branches and leaves of my family tree, right into my DNA. For many years I did not want to be tested, did not want to know that I was for sure a ticking time bomb for cancer. I planned to live healthily, and make choices that could help to keep cancer at bay. But then my OB/GYN talked to me about the test and my risks, and with a 2 year old and 6-month-old twins at home I knew right then I couldn’t risk anything. I had to know. I had to do whatever I could to be their mom for the rest of my hopefully long life.

Photo courtesy of Kara Raudenbush Photography

I met with a genetic counselor to learn more about BRCA genetic mutations with my husband, and we decided that I would begin breast and ovarian cancer surveillance with ultrasound, blood work, mammograms, clinical breast exams, and MRI while meeting breast surgeons and researching reconstruction options. With a BRCA genetic mutation there is also ovarian cancer to consider, however I was too young for consideration to remove my ovaries and fallopian tubes based on my family history and age. I made the decision to go ahead and have a prophylactic double mastectomy in May 2012. That spring I wasn’t feeling well, with several symptoms on the ‘watch list’ for ovarian cancer so I went to see my doctor. The ultrasound revealed that my ovaries were just fine, and in fact I was not ill- I was pregnant!

My surgery has now been postponed, and my new daughter is 9 months old. I’m enjoying being able to breastfeed her, as that is something I would have been heartbroken not to be able to do if I had gotten pregnant again post-surgery. As a nursing mother my surveillance options are limited, which is a risk because I cannot have mammograms or MRI. I'll revisit my surgery decision in the spring of 2014, new research comes out all of the time and my team of doctors and I can re-evaluate my options. I share my story because people think breast cancer happens to women over 50, or that the genetics of breast cancer got blown out of proportion when a celebrity announced her decision recently. I am a real person, a young person, who has a mother who was diagnosed with breast cancer twice before the age of 50, whose great-grandmother died at 47 from breast cancer .

We cannot change our DNA or history, but I can help change my future and do what I can to be around for my four children, my husband and my family.
 

The breast cancer program at Penn's Abramson Cancer Center offers Genetic Testing and Counseling for patients and families at increased risk for cancer and related genetic mutations.
Learn the facts and request a consultation today.

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Previvor Day Celebrates Knowledge, Power and Life

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 for BRCA at Penn Focuses on BRCA1 and BRCA2

The Basser Research Center 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 for BRCA 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 for BRCA will contribute to all stages of research and clinical care relevant to BRCA-related cancers.

The breast cancer program at Penn's Abramson Cancer Center helps you understand your options. Learn the facts and request a consultation today.

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Hereditary Breast and Ovarian Cancer: A Previvor’s Perspective

Jane E. Herman, a BRCA2 mutation carrier, is the writer and editor at the Union for Reform Judaism. She also volunteers as an Outreach Coordinator in New York City for FORCE: Facing our Risk of Cancer Empowered and blogs regularly about her BRCA journey and other slice-of-life matters at JanetheWriter Writes…

With Halloween candy lining the aisles in my local drugstore just as kids are starting back to school and Christmas tinsel and lights not far behind, it should come as no surprise that pink yogurt lids have already made their annual debut in my grocery store’s dairy section, and pink pens are on sale at Staples.

Whoa…not so fast!

If you rush from today straight into October, you’ll miss National Hereditary Breast and Ovarian Cancer (HBOC) Week, which bridges Ovarian Cancer Awareness Month in September and Breast Cancer Awareness Month in October. HBOC Week was created in July 2010 when Rep. Debbie Wasserman Schultz (FL-20), who herself has been personally affected by HBOC syndrome, introduced House Resolution 1522, designating the last week in September as HBOC Week and the last Wednesday of the month as National Previvor Day.

This year, HBOC Week begins on September 29 and runs through October 5, with National Previvor Day on Wednesday, October 2.

As it does each year, the specially designated week honors individuals and families at significantly increased risk of hereditary cancer because of family history or the presence of a known BRCA (BReast CAncer) gene mutation. These mutations inhibit the body’s ability to fight rapid, unregulated cell growth and suppress tumors. (Here’s information about the basics of BRCA mutations.) HBOC Week also recognizes survivors of breast and/or ovarian cancer, as well as previvors—those who are at risk for these cancers, but remain disease free. In recognition of HBOC Week and the estimated 750,000 BRCA mutation carriers in this country, the majority of whom do not know they are carriers, let me give you a bit of a previvor’s perspective.

Each of us comes to the HBOC table with questions and views based on our own family history and where we happen to be in our own lives. In some families, ovarian cancer prevails; in other families it’s breast cancer. In still others, it’s both. Being a previvor is a blessing—and a curse—and each one of us takes a different path and a different timeframe to reach the decisions that are right for us. Some of us know immediately what we’re going to do. Others take months or even years to research and ponder the options before we reach our decisions, but even then may not act on them right away. Some of us have mastectomies prior to having children, deciding it’s better to forego breastfeeding knowing that we’ll be around to watch our children grow up. Oth-rs opt to complete our families quickly so we can move on to the prophylactic surgeries, while still others choose surveillance for years and years, and, if we’re lucky, don’t ever see the inside of an operating room. Some of us remove our ovaries and not our breasts, others do just the opposite. Our choices and our decisions are as individual as we are.

My Previvor Experience

My own family history unfolded in such a way that I was 47 before I learned I carry a BRCA mutation. Thus I was spared the fertility and childbearing issues that my younger BRCA sisters confront regularly. Within four months of receiving my test results (which was just after quickly losing my mom to triple negative breast cancer caused by a mutation she didn’t even know she had), I had a complete hysterectomy. Although the surgery and recovery were uneventful, I do still deal with the troubling effects of surgical menopause—nearly three years after the fact.

Initially unable to wrap my head around a mastectomy, I opted for surveillance to manage my breast cancer risk. That plan, however, quickly fell by the wayside when a baseline MRI showed a number of things that, according to the medical oncologist in charge of my monitoring, “weren’t perfect and needed further study.” The following week, I had an ultrasound, another MRI, and a needle-guided biopsy, all of which, thankfully, showed no evidence of cancer. Nonetheless, so many tests and so much anxiety in such a short span of time convinced me that I couldn’t live the rest of my life with the potential for a similar ordeal every six months. Within a few weeks, I had consulted a breast surgeon and a plastic surgeon, and had scheduled a prophylactic mastectomy with microsurgical reconstruction using my own abdominal tissue. The process entailed 12 hours of surgery, eight weeks of recovery, and a complication—necrotic tissue that had to be excised, leaving a sizable scar that’s still healing today, more than two years later. Nonetheless, I am pleased with the results, satisfied with my decisions, and extremely relieved that the threat of neither breast nor ovarian cancer hangs over me. At the same time, although my scars—both physical and emotional—fade a little bit each day, I’m not sure they’ll ever disappear completely.

This week, as we transition from Ovarian Cancer Awareness to Breast Cancer Awareness, instead of racing down store aisles in search of yogurt in a container with a pink lid, take a few minutes to acknowledge the many families—including some you likely know—whose members are at risk for hereditary cancer, remembering the unique struggles, challenges and triumphs we face as part of the HBOC community.

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Cancer Awareness Month for September: Thyroid Cancer, Prostate Cancer, Previvor Week

September is thyroid and prostate cancer awareness month. Previvor week is also in September Be sure to subscribe to the Focus On Cancer blog and like the Abramson Cancer Center Facebook page for more information on thyroid and prostate cancer throughout the entire month, as well as Previvor week.

At a Glance: Thyroid Cancer

• There are four main types of thyroid cancer: Papillary, follicular, medullary, and anaplastic thyroid cancer.
• Thyroid cancer is the fastest increasing cancer among men and women today. There is no known cure for advanced stage thyroid cancer, only treatments to help slow down its growth.
• If detected early, there is a very good prognosis so asking for a neck check while at the dentist and your general practitioner is very important.

Learn more about the treatment for thyroid cancer at the Abramson Cancer Center.

At a Glance: Prostate Cancer

• Prostate cancer is the third most common cause of cancer death in men over 75, and is rarely found in men younger than 50.
• According to a recent study in Cancer Prevention Research journal, a high fiber diet can slow the progression of prostate cancer.
• Many older men have slow growing, low-volume prostate cancer that does not affect life expectancy because of how long the cancer takes to grow and become clinically important.

Learn more about the treatment for prostate cancer at the Abramson Cancer Center.

At a Glance: Previvor Week

• The term “cancer pre-vivor” arose in 2000 from a challenge on the website, FORCE, which stands for “Facing Our Risk of Cancer Empowered.”
• 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.
• The goal of Hereditary Breast and Ovarian Cancer (HBOC) Week and Previvor Day is to raise awareness about hereditary cancer.

Learn more about Previvor week at the Basser Research Center for BRCA.

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Focus On Cancer Year in Review: FORCE and BRCA Previvors

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 for BRCA at Penn Focuses on BRCA1 and BRCA2

The Basser Research Center 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 for BRCA 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 for BRCA 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

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 for BRCA at Penn Focuses on BRCA1 and BRCA2

The Basser Research Center 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 for BRCA 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 for BRCA will contribute to all stages of research and clinical care relevant to BRCA-related cancers.

Learn more about the Basser Research Center.

Read More

What is a Previvor?

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