May 22, 2013 - After testing positive for BRCA-2, a mutated gene, last August, Stephanie Venner was told by her doctor that her body was a ticking time bomb.
Rather than waiting for the explosion, the Brandon Township resident short-circuited the bomb by having a complete hysterectomy and a preventive double mastectomy. Her sister, Groveland Township resident Tammy Kentros, also tested positive and is following suit.
Like actress Angelina Jolie, who recently revealed that she tested positive for the BRCA-1 gene and underwent a preventive double mastectomy, Venner and Kentros were told they had an 87 percent risk of developing breast cancer. They also had an 87 percent risk of developing ovarian cancer (Jolie's risk is 50 percent for ovarian cancer). Also like Jolie, their mother died of breast cancer at a young age.
"I did this on my terms," said Venner, 37. "I didn't have breast cancer. All my pathology reports came back clean, everything was on my terms. But I am a control freak and did it the way I wanted to do it, not because I was sick and had to do it. Knowing my Mom died at 49, I would think, 'I only have this many years left.' Now I don't think I have a deadline, at least for breast cancer. It's an extra lease on life."
Caroline Avery, Stephanie and Tammy's mother, was 45 when she was diagnosed with breast cancer. After a 4-year battle with the disease, she died in 2004. Avery's mother also died at a young age from breast cancer and her sister died of pancreatic cancer.
Because of their family history, insurance covered the cost of the $3,000 gene test for both Venner and Kentros. Neither was surprised by the results of the test and they had no doubts about what needed to be done.
"I already have kids, I'm already married, I didn't see any other option but this (the preventive surgeries)," said Venner, who is married to Glen and the mother of Jordyn, 8, and Landon, 2. "My husband agreed, 'whatever increases your chances of staying alive, just do it.' My husband and family have been more than supportive."
In November, she had a complete hysterectomy, rather than just having her ovaries removed, because she didn't want to chance getting cervical or uterine cancer. After a few weeks she returned to work as a mortgage underwriter for a bank. She notes that while the hysterectomy put her into menopause, it hasn't been a major change. She only wishes now she would have had the breast surgery first as the hysterectomy made her a more emotional person.
"I told my gynecologist, 'You took out my uterus and gave me a heart,'" she laughs.
In January, she had the double mastectomy and has had more issues with that surgery.
"The breast one was physically painful and emotionally hard," said Venner, who is still undergoing reconstruction. "It's hard for me to look in the mirror. I couldn't hold my kids. My husband had to help me shower… He kept telling me it didn't matter what it looked like."
Her sister, testing positive in October for the BRCA-2 gene, had her hysterectomy in February. Kentros' double mastectomy is scheduled for next month.
The Groveland Township resident is only 33, but she and her husband, Ted, knew their family was complete with son, Jack, 8, and daughter Olivia, 5, and she wants to be around for them and watch
the milestones in their lives.
"I just figured, the sooner the better, there's no reason to wait and I don't have to worry about it anymore," she said. "I don't have to worry every six months with every test or mammogram. It's more of a relief, I'm not scared about the whole thing. I have a light heart about it… My biggest factor was watching my mom go through it, I would never want my children to have to watch me go through that."
Keri Leslie's children, Sydney, 12, Colton, 10, and Amelia, 4, were also at the forefront of her mind in deciding to have a preventive double mastectomy last September.
The Brandon High School teacher, township resident, and wife toTom, actually tested negative for the gene mutations. However, her mother died of breast cancer and Leslie herself has had numerous tests and biopsies that showed abnormal cells. After doctors told her she had a 1 in 3 chance of developing breast cancer, she decided the risk of leaving her children without a mother was too great.
"I don't want my life to be all about tests and biopsies and when is it going to happen and waiting for it to happen, so I decided to have a preventive double mastectomy," said Leslie.
In 1994, Leslie's mother, Carol Vick, then 45, was diagnosed with a very rare, inflammatory cancer in her right breast and underwent surgery, chemotherapy and radiation. A year later, an invasive lobular cancer was found in her left breast. She died in 2001 at the age of 51, just months before her first grandchild was born.
As the years passed with more tests, and without her mother, Leslie found herself asking why she was waiting for the surgery.
"In February 2012, I started the process because I started thinking about my own mortality," she said. "I had had all my children, and I am never going to be a swimsuit model, so who cares? My number one reason is I don't want to leave my kids without a mom. My husband travels a lot and I'm busy and I tell my 12-year-old, you don't have to be stressed out as me, because you have me. I need my mom and don't have her, but my kids will have me."
She notes that when she tells people what she had done, they think it's "drastic," until she tells them how she arrived at this point. Although Leslie had the initial surgery in September, she doesn't expect the process, including reconstruction, to be complete until this fall.
While the process, which involves expanders and stretching of skin to make room for implants has been uncomfortable, she has pushed through the pain.
"It's not fun, but I just keep saying, 'I don't have cancer. I can live through this.'"
Theresa Hampton, 57, wishes she'd had the BRCA-1 test done years ago and had the opportunity to prevent cancer in not only herself, but in her daughter, too.
The Brandon Township resident, married to Christopher and the mother of five children, first heard the diagnosis of breast cancer 13 years ago-- not for herself, but for her eldest child, Michelle Byrd.
Her daughter, who was born with cerebral palsy and had overcome that challenge to not only walk, but have children, was only 26-years-old then.
After a partial mastectomy and hysterectomy, Michelle has been cancer-free for more than a decade. But in 2008, the family would face two more cancer diagnoses—this time in Hampton. In January of that year, she found a lump in her right breast. Treatment included a lumpectomy, chemotherapy and radiation. Less than eight months later, doctors removed a tumor in Hampton's armpit, as well as numerous lymph nodes.
In 2009, the bad news continued when cancerous lymph nodes that had spread from her breast were found in the right side of Hampton's neck. She underwent a selective neck dissection, more chemotherapy and more radiation, concluding treatment in 2010.
In October 2011, after learning she had the BRCA-1 gene, she had a total hysterectomy. When the breast cancer returned this year, she had a bi-lateral mastectomy in February.
"You can blame God and say, 'Why me?'" said Hampton. "But I have never said that. My inspiration is my daughter. She was 26 and was diagnosed with stage 3 breast cancer. She had two little boys, cerebral palsy, walks with a cane and has conquered everything. She's unbelievable."
She begins to cry.
"When my cancer came, I knew what to do because I had gone through her. When I started chemo, I walked in the bathroom and shaved my head and moved on. You don't ever stop thinking about it, because you want to live and live for your children. I have three awesome granddaughters and two awesome grandsons and I want to see them all get married and I am expecting my first great-grandbaby this fall. I have a lot to live for and my life isn't over yet."
Hampton is glad Angelina Jolie shared her story and she is happy to have shared hers. She continues to share her story with her family, logging her cancer treatments and complete medical history and keeping a record of what has happened to her. She hopes others do the same.
"How would you feel if you didn't get tested and your daughter gets it, and you could have prevented it?" she wonders. "Every day is a new day and I'm just happy to be alive."
Susan covers Brandon Township and Ortonville