Jennifer Harp-Douris wasn't surprised at all when a doctor told her she had breast cancer. The artist and jewelry designer from Upper Township had known something was radically wrong with her left breast, even if no cancer was showing up on mammograms or other tests. So when she was finally diagnosed, it was more confirmation than revelation to her.
But some of her doctors were shocked when Harp-Douris told them she'd decided to have a double mastectomy- even though there was no sign of any trouble in her right breast.
"When they cut into me, my entire (left) breast was filled with cancer," said Harp-Douris, then a widowed but remarried mother of two sons, who adds the medical professionals weren't the only ones she surprised. "I made a decision that shocked me."
It made sense when one of her doctors framed the issue this way: "If I had it on one side and they didn't (see) it, how did I know it's not in the other side, too?" Still, she adds, "Some doctors thought I was being ridiculous. They thought (a double mastectomy) seemed like an extreme measure" for the type of cancer she had, in her milk ducts.
More women around South Jersey and beyond face that same painful, fateful decision now about having their breasts removed - even without any cancer diagnosis - as testing for BRCA, or the "breast-cancer gene," becomes more widely accepted and available.
U.S. government cancer statistics say BRCA mutations are responsible for just 5 percent to 10 percent of all breast cancer cases. But celebrity revelations of prophylactic mastectomies - with actress Angelina Jolie the latest and biggest name, earlier this year - have spread awareness of the possibility of women who have those mutations in two BRCA genes greatly reducing their future breast-cancer risks by having their breasts removed.
Dr. Nina Radcliff, of Galloway Township, isn't a breast-cancer specialist. She is an anesthesiologist for AtlantiCare, and even she admits she got educated about BRCA after the superstar, Jolie, went public with her double mastectomy.
Radcliff, a regular medical commentator on Fox News, had been scheduled to be a guest one May day on "The Dr. Oz Show," for a pre-taped episode on sleeping pills. She recorded her scheduled Oz appearance on her DVR, but when she got home to see it that night, it was a different show. At first, she thought she'd gotten the day wrong, but she realized her episode had been bumped by breaking news on Jolie's dramatic announcement.
"Then I watched it and started Googling, and found out I have a reason to get tested" for BRCA mutations, Radcliff said. As she got farther into it, "I said, 'This is me.'"
Her research showed her testing for the BRCA1 and BRCA2 genes isn't recommended for every woman. But it is for those with a family history that includes any of the following categories:
•Members with breast cancer before age 45
•Several members on the same side of the family with the disease
•Breast cancer and ovarian or pancreatic cancer on the same side of the family
•Any cases of male breast cancer - the disease is 100 times more rare among men than among women;
•Jewish ancestry combined with even one family case of breast or ovarian cancer
Radcliff had to answer yes to one of those questions: Both her mother and grandmother had breast cancer. So the doctor got herself tested, and after a few weeks of waiting, she found out she had a mutation in a BRCA gene - which are known as "protector genes" against breast cancer, as she puts it. The mutation means the defender isn't working right.
Having the mutation "does not mean that you will develop cancer," she says, "only that you are at a higher risk of developing cancer." But the increased risk is considerable - "50 to 85 percent for breast and/or ovarian cancer, depending on the study."
Radcliff went through counseling before and after the test, and she finally decided to cut her risk - by having a double mastectomy. She had the surgery done late this summer, and a few weeks later, she went back to start her breast reconstruction surgery.
Kim Berk, 44, of Egg Harbor Township, already knew she had breast cancer by the time she was tested for BRCA mutations.
She was seven months pregnant - with twins - when her cancer was diagnosed in 2009.
She went through chemotherapy until she had her babies - but she almost didn't survive having them.
"I delivered the babies on life support," she said, because an embolism, caused by amniotic fluid getting into her bloodstream, stopped her heart while she was in childbirth. She and her husband and chief caregiver, Nate, had been on the way to Philadelphia to deliver, but they ended up being lucky she went into labor when the closest medical facility to them was an emergency hospital.
Berk survived her near-death experience while bringing two new lives into the world. Then she and Nate took the twins, Abigail and Jonathan, home - to a house where their big brother, Nathan Jr., was just 2 years old.
Ten weeks later, Kim had a double mastectomy - even though her cancer was in just one breast. She decided to have both removed, though, because she had tested positive for a BRCA mutation, and because her form of breast cancer doesn't respond to maintenance drugs. She said she may have heard of BRCA before she was diagnosed with cancer, but had never given a thought to being tested for it.
As part of her recovery, Kim started to run, mainly because cold air helped control the nausea chemotherapy was causing her. But less than a year after she had her mastectomies, follow-up testing showed her breast cancer had returned, in the chest muscles - and under her reconstructed breasts. She knows just 5 percent of women who have mastectomies have cancer return there, but Radcliff, the doctor, explains that a mastectomy still leaves some breast tissue behind, and the disease can return there.
Berk had more chemotherapy and radiation, but she kept running, which gave her something to focus on while a lot of her life was turned upside down.
"I had so many doctor appointments, and I'd be crying the entire way there - I was so overwhelmed with what happened and what could have happened, I needed something positive to do instead of dwelling on the negative," she said. "Running was my way of feeling normal, and I just had this epiphany one day: I said, 'It would feel great to run a marathon."
She trained her way through chemotherapy and in 2011, she finished all 26.2 miles of the Atlantic City Marathon - with a lot of her family and friends either running with her or cheering for her. She has since run another marathon, and she hopes to do the half-marathon this month back in Atlantic City.
Speaking of positive, Berk adds that because of her BRCA test, at least a half-dozen other family members have also had themselves tested - and found they also had the mutations.
But she warns others considering genetic testing that most health-insurance plans don't cover the process - which can cost several thousand dollars.
"My family was able to get theirs covered because I tested positive" for the mutations, she said,
No one in her family has chosen to have a prophylactic mastectomy, but all have stepped up their testing and monitoring, she's happy to say.
"My mom could have gotten (cancer). My sister could have gotten it, if I hadn't gotten checked. ... I always look for a reason, 'Why did this happen?' And in my mind, I was able to save some people in my family," she said. "I just happened to be the lucky one who got it."
Yes, that irony is intended. But this is just honesty:
"It's very emotional going through a double mastectomy," she said. "It takes a long time to feel comfortable in your own body again."
Harp-Douris, who informally counsels other women either considering the surgery or after they've had it, agrees she "grieved the loss of my breasts. I cried for two weeks. ... I was really sad. But then I realized I could replace them so they look normal."
And in an interview, she shows she has obviously gotten comfortable talking about them - and about the process of how they were restored.
"I have really rockin' Barbie boobs now," she says. "I call them my best accessory. But they only look good - they don't feel anything."
She has more post-mastectomy comedy material:
"I think mine look better now than before," she said. "Gravity has no play in this whatsoever. When I'm 75, I'm going to have a really great rack."
Still, she's very serious about this:
"I think more women would consider mastectomies if they knew they would come out looking OK. I think that would save a lot of lives," she says. And this is serious too, about the loss of sensitivity in the redone breasts:
"It is what it is, and they're not going to kill me," she said. "I was already a widow, and my kids are not going to lose a father and a mother."
Given her experience with breast cancer and her profession designing jewelry, Harp-Douris likes to create a new line every October, for Breast Cancer Awareness Month.
"My favorite one is, 'Fight like a girl.' I like to do ones that are more empowering than 'survivor,'" she said. "Anybody can be a survivor. I want to be a warrior. I want to be a fighter."
Contact Martin DeAngelis: