Beating the breast cancer odds
Surviving, heading-off cancer a family affair
Cancer is something Jodi Mackie’s family has been keenly aware of for as long as she can remember.
Mackie’s mother, Irene Saunders, is a three-time breast cancer survivor who, at 16, lost her own mother to breast cancer. Three of her female cousins died of breast cancer.
“Cancer has been a part of our family conversation my whole life,” Mackie, 41, of Danville says. “Literally my entire life. I’m not shy about it.”
Mackie knew she would have to be very aware of her own health as she grew older, but a genetic test several years ago all but assured that it was something that wasn’t going away any time soon. Mackie tested positive for BRCA1 — a gene that dramatically increases a person’s risk for developing breast and/or ovarian cancer.
“If you test positive for the BRCA1 mutation, they can tell you the severity and give you your personal odds,” she says. “And mine were bad.”
According to her test results, Mackie stood a 98 percent chance of developing breast cancer by the time she was 45, and a 68 percent chance of developing ovarian cancer.
“Before I knew about BRCA, I knew my mom’s history, so I felt like a ticking time bomb,” Mackie says. “So honestly, for me, finding out I was BRCA positive allowed me to take steps for prevention. It gave me the freedom to make choices.”
Among the options offered were continued screening, including ongoing mammograms and MRIs, or a more radical approach. Given the odds, Mackie wanted to remove any doubt. In 2011 she underwent an oophorectomy — surgical removal of both ovaries — and in April of last year she underwent a double mastectomy.
“Every woman’s reaction is going to be different, but I wanted to be armed with the facts,” Mackie says. “With my mother, she first had a lumpectomy. Then the second time she had another lumpectomy on the other side. The third time she said, ‘forget it,’ and had the mastectomy.”
It was a different time, however, which presented challenges that have since improved.
“Thirty years ago insurance didn’t cover breast cancer surgery, but now it’s S.O.P.,” Saunders says of her early procedures. “At the time, I was a single mom and I found out I had been dropped, so there I was with no health insurance. At the time, New Hampshire had a thing called Catastrophic Aid, which could help you. Insurance has come around and you don’t have to battle for it when you’re having reconstructive surgery.”
Now, Saunders would be supporting her daughter as she went through a similar ordeal. Given the family’s medical history, she knew Mackie was taking the best option. Still, it didn’t make the process easier. There were physical and emotional challenges ahead.
“I thought it was a wonderful decision,” Saunders says. “But it broke my heart because I feel like it was something I passed on to her. I know it’s not that, but your brain tells you one thing and your heart tells you another. She had to go through all this because of family history.”
Saunders, who is a longtime survivor of multiple cancers, knew that her daughter had the right mindset to see the procedure through.
“I didn’t want to see her go through everything I did — the chemo and the sickness and the radiation and the loss of hair and day after day of vomiting,” she says. “When she made up her mind, her doctors were right on board with it. It was her best chance of survival.”
Mackie had the double mastectomy procedure at Elliot Hospital in Manchester.
“It sounds strange, but on one hand the thought of surgery and having your whole world change is scary. But on the other hand, feeling like a ticking time bomb is even scarier. I may still get it someday, but those odds were terrible. Taking into account my family’s history and having all the information, it gave me a way to get ahead of the cancer,” she says.
Following the procedure, Mackie began the recovery process — which meant approaching everyday life a little differently. She began shopping for clothing that would allow for ease of movement while healing. Her first visit to a clothier didn’t go well.
“I just went to a normal place,” she said. “I left there in tears.”
Mackie then visited the Amanda Thomas Women’s Boutique in Merrimack — a business that caters to women undergoing chemotherapy and breast surgery. Mackie says she made an appointment, was assigned a dedicated person who helped find the proper garments and was made to feel entirely comfortable.
“I felt like I was in a room with my own mother,” she says. “You only see things geared toward cancer patients. You won’t see lingerie you’ll never be able to wear again. It’s only for people like you and things that pertain to your condition. There was none of the outside pressure of a regular retail shop. To me, it was a Godsend.”
Owner Jackie Staiti says that establishing the boutique meant being accredited and approved for insurance. The effort, she says, has been worth it.
“It was a long haul, but every time someone came through the door and said, ‘thank you for what you do,’ it’s worth it,” Staiti says. “If they can go through surgery and chemotherapy, I can get through accreditation. I feel so blessed. It’s become a calling.”
Mackie continues to recover from the procedure — an infection on one side caused a setback — but she credits her success so far to the support of her family (“obviously, these kinds of decisions are easier when you have the right fan base at home,”) including her husband, Kevin, and son Tyler — who will also need to be tested for the BRCA gene in the coming years.
It’s also left her a little wiser.
“The most important thing is to immediately find someone to talk to that’s been through it or knows something about it, because that’s a lot of emotions to process at once,” she says. “Find a support group. They have them at Elliot.”
Mackie, who, along with her mother has become an informal support advocate, says such groups are vital. When she was first learned the test results, she was paired with another patient who also tested positive for BRCA1. She says her support group partner opted not to have the procedure, developed breast cancer and died a year ago.
“I watched that woman die because she had no one to talk to,” she says.
In the short term, Mackie looks forward to getting back to her former lifestyle, which includes playing hockey and catch with her son. And while she realizes the procedure does not insure her against developing cancer in the future, she’d go through it again.
“Even knowing the complications, I’d rather deal with it than sit around and wait for the other shoe to drop,” she says. “I had to protect myself and my family.”