Trying to help save lives from silent killer: ovarian cancer
Updated On: Sep 09 2013 11:27:38 AM EDT
Angelina Jolie’s inspiring story about her breast surgery has helped many women cope with an emotional issue.
Like Jolie, Caroline Maykovich, whose mother had just died of ovarian cancer, was found to carry the BRCA 1 mutation. This significantly increases a woman’s risk of developing breast or ovarian cancer.
"Our stories are so similar; I think it kind of made me feel better about it because I was nervous what people would think. It is just a drastic measure to have this surgery," said Caroline.
For women with a family history of breast or ovarian cancer genetic testing can provide lifesaving information. But the decision to get tested is not a simple one, and many women don’t want to know the answer. In her death, Caroline’s mother, Belinda, played an important role in helping her daughter sort out her feelings and identify her risk. At age 48, Belinda Sue Nantais developed vague symptoms that many women don't pay attention to. They turned out to be from ovarian cancer that had already spread in her body, ultimately taking her life.
Now 27 years old, Caroline Maykovich thinks back on her mother's legacy.
"She was very passionate about wanting to help others with this disease as it was killing her. She didn’t focus on herself and what she was going through. It was just, what are we going to do to make this change, what are we going to do to save someone else's life?"
Belinda Sue, or Bindy as she was known to friends, didn't have a distinct family history of breast or ovarian cancer. However, after her diagnosis of ovarian cancer she was tested for the BRCA gene mutation.
"When she found out that she was positive for the BRCA 1 mutation she wanted me to be tested as well, and I didn’t want to know. I went through a lot of denial when my mom was sick. It was not until the day she died and I sat next to her and I watched her pass. At that moment I realized I'm getting tested," said Caroline.
Still raw from her mother's passing, her BRCA test returned positive.
"It was devastating. I cried. I was really scared, it just shook my world I guess,” said Caroline.
The effect was immediate and profound. The first thing she told her father when the results came back: "I said I need to have a baby, and he said whoa whoa slow down. I said no you don’t understand I need to have a baby. I want to probably get a hysterectomy into my early 30s and I’m already 26. I need to get things rolling."
The only hitch: she wasn't quite married yet. Fortunately, Caroline was already seriously involved with someone.
"I knew we were getting married already and I knew I desperately wanted to be a mom and this just got things rolling a little faster."
Nine months later, little Sophie was born.
"I think that this is a gift from mom," said Caroline’s father, Tom.
Knowing that she carries the BRCA gene mutation has changed her life, she gets more frequent cancer screenings, and surgery is in her future.
"If I’m done with ovaries and why not get rid of them if it can decrease my risk. Same with the breast. If I can have a double mastectomy and take my risk from 55 percent down, why wouldn’t I?" said Caroline.
Bindy’s legacy is also alive through her husband, Tom Nantais, Chief Operating Officer of the Henry Ford Medical Group.
"Because she was diagnosed so late her chances of survival were very low. She said, 'I want other people to know about this before they get it, so they have a chance,'" recalls Tom.
That gave birth to the Belinda Sue Fund, which supports ovarian cancer awareness and research for a better screening tool. You might recognize Belinda Sue Nantais from the billboards dotting Metro Detroit highways. The not-for-profit fund helps support billboards running since January of 2012.
"We've had them on I-75, they’ve been on 94 they’ve been on Telegraph they’ve been on Woodward in Ferndale,” said Tom.
They are aimed especially at younger women who may not see a doctor often.
"One of the tag lines on our billboard is ‘know your symptoms’ so we direct you to our website and we define what the symptoms are," Tom adds.
Possible symptoms of ovarian cancer include abdominal bloating, increased abdominal girth, clothes feeling tighter around the waist, difficulty eating or feeling full quickly, abdominal or pelvic pain/discomfort, frequency in urination. When symptoms persist beyond 2 weeks that’s when you should contact your physician.
There are treatments for ovarian cancer, but the most important thing is early detection. If it is not found until it has spread, the chances for successful treatment are very small. That is why awareness is so important. For more information on ovarian cancer and the Belinda Sue Fund go to BelindaSueFund.org.
This Sunday, Sept. 8, 2013 from 9 a.m. to noon, the Belinda Sue Fund is having their second annual zoo walk at the Detroit Zoo to raise funds for ovarian cancer awareness.