Feeling alone with the news of a BRCA mutation? Sometimes hearing how others have faced the news of BRCA1, BRCA2, or a related cancer can help. Read about how others have dealt with cancer, BRCA cancer risks, or BRCA in the family below.
Carlette knew she was at risk for cancer before she ever felt a lump in 2009. Cancer was a topic that she and her four sisters had discussed because their mother survived breast cancer twice, and at the time was being treated for pancreatic cancer. When Carlette was diagnosed with breast cancer, she decided to undergo genetic testing and it was confirmed that she had a BRCA mutation. Armed with this knowledge, Carlette had a double mastectomy with reconstruction, extensive chemotherapy and radiation treatments, and then chose to have her ovaries removed (a prophylactic oophorectomy) to reduce her risk of ovarian cancer.
After Carlette's positive test result, three of her four sisters opted to be tested. While there are many ways to look at the situation, Carlette focuses on the empowerment that results from being armed with information, saying, "One of the things you learn right away is that if you test positive, you can't let the disease consume your life. You have to be on top of preventative care, but the focus needs to be on living your life."
Vice President, Volunteer Programs for FORCE
After losing her 38-year-old grandmother and 54-year-old mother to hereditary breast cancer, Sandy grew up thinking that breast cancer was in her future. She informed her doctors and followed a surveillance plan for 10 years before deciding to have genetic testing. When Sandy learned that she had a BRCA1 mutation at age 36, equipped with information from her doctors at Penn Medicine, she took the proactive steps of a prophylactic bilateral mastectomy and three years later an oophorectomy and hysterectomy. Sandy feels extremely lucky to have received this gift of knowledge and is proud to be a Previvor, a survivor of a predisposition (or increased risk) for cancer.
Now Sandy wants to make sure other individuals and families receive this same gift. "It's important to know your family medical history to see if a pattern of cancer exists and to seek genetic counseling if it does. This could save you and your other family members' lives." As VP of Volunteer Programs for FORCE: Facing Our Risk of Cancer Empowered, a nonprofit organization dedicated to providing support, education, advocacy, awareness and research specific to hereditary breast and ovarian cancer, she delivers this message on a daily basis via FORCE's passionate trained outreach and helpline volunteers across the country that provide group and one-on-one support for those in need. Sandy is extremely excited about the hope Penn's Basser Research Center brings to our entire community and its collaboration with FORCE ( www.facingourrisk.org.)
Tara Feiner experienced the devastating impact that breast cancer can have on a family. Her mother was diagnosed with breast cancer at the age of 36. After seven years of multiple surgeries, chemotherapy, periods of remission, metastasized cancers, and hospice, Tara's mother died at the age of 43, one month before Tara's 19th birthday. Her grandparents lost their daughter; her father lost his wife; and she and her brothers lost their mother.
After years of routine monitoring, just before her 36th birthday, Tara's MRI indicated that there was an occurrence that was "probably benign," words her mother had heard twenty-five years prior. Tara went to UPENN and tested positive for a BRCA2 mutation. She chose to have a prophylactic double mastectomy with reconstruction and an oophorectomy and hysterectomy. She wanted to spare her family and the next generation the devastation that she and her brothers experienced.
The last couple of years have not always been easy, but Tara has no regrets. In fact, she has hope. She was excited to have increased knowledge and a course of action available to her that her mother did not have. Her hope is that as research continues, future generations impacted by BRCA mutations will have better, less invasive options than she did – perhaps even an injection or vaccine – to mitigate their risk.
Tara is a firm believer that knowledge is a powerful tool. Coupling this tool with humor and the ability to laugh at herself and her situation, she is confident that she will be present for every birthday, celebration, graduation, and wedding!
In 2002, at age 39, Helen was diagnosed with DCIS breast cancer and had a lumpectomy and radiation. One of Helen's cousin's is a nurse, whose mother had died of breast cancer at age 60. She urged Helen to get tested to see if the family had a BRCA mutation. Results showed that she did indeed carry a BRCA2 mutation. Initially she and her four sisters did nothing about these results, but when Helen was diagnosed with ovarian cancer in 2009; all four of her sisters underwent testing. When they all learned that they carried the BRCA2 mutation, they opted to remove their ovaries. Unfortunately, cancer struck their family again late in 2011 when Helen's mother and sister were diagnosed with triple negative breast cancer. It was then that all six of them had mastectomies and reconstructive surgeries within a grueling 4 months of each other.
Helen comments on her experience: "To say that this journey has been difficult for me and my family is an understatement, but I recognize now more than ever how important it is to be proactive. Whether you're facing cancer or a mutation that makes you more susceptible to cancer, it is with you forever. The Basser Center is the first hope in finding better alternatives for those with BRCA. I'm so grateful to the Grays for their dedication to this cause."
After undergoing genetic testing, Helen's sister, Chris, consulted with Dr. Susan Domchek, Executive Director of the Basser Research Center for BRCA, and was the first of the four sisters to elect the option of double mastectomy. Chris explains, "Deciding to be proactive and have a prophylactic double mastectomy felt right to me. I wanted to stay ahead of cancer, and am thankful for this life-saving opportunity and the support of family and friends." She continues, "the secret to getting through such a difficult year was love and laughter, and our family has an abundance of both!"
Chris' BRCA journey doesn't end there: Her 23 year-old daughter recently tested positive for the BRCA2 mutation as well. With this truth as her new reality, Chris is extremely grateful to Mindy and Jon Gray for their donation and creation of the Basser Research Center, saying "It is my sincere hope that they make strides in the next 10 years which will benefit my daughter and all BRCA gene holders."
Andrew J. Cohen, has supported the hereditary breast and ovarian cancer community for over a decade, having started the Marjorie B. Cohen Foundation in memory of his sister in 2001."I was extremely close with my sister," says Cohen. "In fact, growing up I truly viewed her as my best friend. After she passed, I felt compelled to do something so other families do not experience what our family went through. The Marjorie B. Cohen Foundation was created to provide the essential education to high risk individuals and families."
Cohen lost his 38-year-old sister, Marjorie, to breast cancer in 2001, only one year after his 59-year-old father died of colon cancer. The family learned, through the illness, that Marjorie carried a BRCA mutation that dramatically increased her risk of breast cancer. Andy, his family, and Marjorie's friends established the Marjorie B. Cohen Foundation which funds and supports cancer genetics research and education at the Abramson Cancer Center, as well as outreach into the community.
The foundation's support helped to recruit brilliant researchers, clinicians, and genetic counselors to address genetic issues in breast and ovarian cancer, and laid the groundwork for the establishment of the Mariann and Robert MacDonald Women's Cancer Risk Evaluation Center and the Basser Research Center for BRCA.
In December 2008, Carmen's sister was diagnosed with ovarian cancer at age 49. Just three months later, as the family was still reeling from this devastating news, Carmen was diagnosed with ovarian cancer at age 55. Sadly, a few months later, their paternal first cousin, Pricilla, lost her battle with ovarian cancer. Furthermore, Carmen's paternal aunt had died of breast cancer and it seemed likely that Carmen's paternal grandmother had died from ovarian cancer. Based on their family history Carmen and her sister underwent genetic testing at the Mariann and Robert Macdonald Cancer Risk Evaluation Center of Penn's Abramson Cancer Center. Further review of the family history showed an even more extensive history of breast cancer than even they had realized.
Coming from a large family of 11 brothers and sisters, all were tested. Carmen and her family recognize the importance of being empowered with knowledge of one's cancer risk. They are grateful to be informed about preventative measures that can reduce risk for cancer in the future.
Carmen is grateful to the Basser Research Center for BRCA for providing her with guidance to make informed decisions for her and her family. "I have a 28-year-old son and a two-year-old granddaughter whose health and well-being are extremely important to me, and although I wish I had known about my predisposition to cancer sooner, I am comforted to know that through my experience, they now have this life-saving genetic information."
Devastated at age 15 when her mother lost her battle with breast cancer at 56, Diane always lived with the fear of getting breast cancer. Her fear only grew worse when at the age of 21; Diane's sister was diagnosed with breast cancer at 31, and again at 42 in the other breast. (Now 70, Diane's sister remains happy and healthy). When Diane was diagnosed at age 53 with ovarian cancer, and a male cousin presented with breast cancer, she decided to undergo genetic testing to try and find some answers. The answer was found: Diane had a BRCA mutation.
Diane and her family have faced the challenges of cancer as best as one could hope – by finding support in one another, with friends, and also through cancer support groups where one can relate to others who have been on a similar journey. Penn's Basser Research Center for BRCA and Abramson Cancer Center is pleased to be able to offer support groups for patients and their families as they cope with their cancer journey.
Diane, now an 8 year ovarian cancer survivor, believes that "Although learning that you have a BRCA mutation can be emotionally draining, at least one has the chance to make an informed decision. I am grateful that the Basser Research Center will help drive research forward and be a resource for us."
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