Cousins with cancer gene take proactive approach
Terri Brown and Kris Kinsey will spend time in their lives waiting – waiting in line, waiting in traffic, waiting for a phone call.
But one thing they won’t be waiting on is the news they’ve got breast or ovarian cancer.
The cousins, ages 40 and 43, respectively, underwent radical surgeries this year – double mastectomies and complete hysterectomies – after learning they have a mutated gene that is linked to a family tendency toward breast, ovarian, colon and prostate cancer.
“I was relieved to find out I had the mutated gene,” said Brown, a New Philadelphia, Ohio, resident. “It was almost a relief because I knew I could do something and not be my mom, my aunt, my grandma, my sister. I’ve seen it since I was 18 years old. I always said, ‘when I get cancer, not if I get it.’ I don’t have to think like that now.”
Terri Brown’s mother, Sandi (Clum) Brown, died from complications related to surgery for ovarian cancer. Kinsey’s mother, Nancy (Clum) Polilli, who was Sandi’s sister, died 10 years ago from breast cancer. The sisters’ mother, Eva Marie (Fisher) Clum, also died from breast cancer.
Terri Brown’s sister, Ronni Roth, 45, is battling cancer for the second time. In 2006, while Roth was undergoing a hysterectomy for possible endometriosis, a spot of cancer was found on her peritoneal lining. The cancer, which is related closely to ovarian cancer, was eradicated via chemotherapy.
A year later, she found a lump in one of her breasts and was diagnosed with breast cancer. She’s gone through chemotherapy again and had a double mastectomy in April. As a result of treating her twice and learning her family history, her oncologist, Dr. Nash Gabrail of Dover, Ohio, suggested genetic testing.
“It’s of no benefit to me at this point because I’ve already had (cancer), but I had to be tested to find that mutation,” Roth said. “They did it and found out what the mutation was. Terri went in December and had the very same blood test done. They ran hers and found out it matched mine.”
Neither Brown nor Kinsey, a Gnadenhutten, Ohio, resident, had any sign of cancer when they decided to take action. Brown’s surgery was in February, and Kinsey’s was in May.
“Without having the surgery, their chances of having ovarian cancer by age 50 was 44 percent and breast cancer 87 percent,” Roth said.
Brown said she knew her test results would come back positive and she was prepared for the next step.
“When Dr. Gabrail called me with my results, he was near tears telling me I was positive,” she recalled. “I said, ‘let’s get it taken care of.’ My decision was to do it now while I’m healthy and get through the surgery easier, or do it later and go through chemo and wear my body down.
“He couldn’t believe I did it as easily and readily as I did. But Mom died at 40, and I am 40. I want to see my grandchildren.”
Kinsey initially was reluctant to take the genetic test because, she said, when her mother died, God promised her she would not have to suffer with cancer. But when Brown’s results came back positive, Kinsey and her husband, Jon, prayed about what to do next.
Kinsey said she was surprised her results came up positive, but she’d already made up her mind as to what course of action she’d take.
“I was prepared that if it was positive, I was going to do the surgery because this is where God led me. The positives outweigh all of the negatives because of the opportunity we have to beat it. God has opened up that door for us not to have to go through that.
“At the time I thought God just meant that I would never have to face this issue. All this time God was telling me I’d never have to go through chemo, lose my hair or have the struggles my mom when through.”
Kinsey said people often tell her how courageous she and Brown are to have had the surgeries.
“In all honesty, it was so cut and dry that it wasn’t as courageous as what people might have honestly thought,” she said. “It was more life or death, now or then.
“The statistics are what they are. When I went in, the doctor actually said it’s just amazing you are sitting here, positive, and I’m not treating you for cancer.”
Kinsey has an adult daughter and son, three stepchildren and a grandchild.
“I’m not ready to give up,” she said. “I’m not ready to sit back and let my life pass by when God opened up this door.”
Brown and Roth have a sister, and Kinsey has a sister, but neither of those two women has gone through the testing. It’s an individual choice, Roth said.
It’s a choice that Gabrail is glad Brown and Kinsey made. He said he admires the women’s courage.
“I told Terri her risk of getting breast cancer was virtually 100 percent,” he recalled. “Basically she’s saved her own life by doing these things.”
Both Roth and Brown have two adult sons who eventually will have to decide whether to be tested. The mutated gene can be passed to the men, who may have an increased risk of breast or prostate cancer as a result.
The women are thankful for the support of their friends and families. They are quite matter-of-fact when it comes to discussing the body parts they no longer have.
“Those parts are not what makes us,” Roth said. “It doesn’t change who you are by losing your breasts or having a hysterectomy.
“You have to make decisions today for tomorrow. We’ve had our children. Now we need to move into the next phase of our lives, and those parts of our bodies are not required to do that.”
About the cancer genes
Research has determined that inherited mutations on the genes BRCA1 and BRCA2 (short for breast cancer 1 and breast cancer 2) are associated with several kinds of cancer.
According to the National Cancer Institute, 13.2 percent of women in the general population will develop breast cancer, as compared with 36 percent to 85 percent of women with the mutated BRCA1 or BRCA2 gene. Women with this gene also have an increased risk of ovarian and colon cancer.
BRCA1 and BRCA 2 were identified in 1995 and 1996, respectively, Dr. Nash Gabrail of Dover, Ohio, said. The genetic testing that discovered the gene in the family of Roni Roth, Terri Brown and Kris Kinsey was developed in 1998, according to Gabrail.
But, he said, the women of the family are not the only ones at risk.
Gabrail explained that the mutated gene is carried on Chromosome 13 and has nothing to do with the sex of the individual. He said that when a family has the mutation, the women have an 80 percent lifetime chance of getting cancer and the men in the family have a 45 percent lifetime chance of getting cancer.
Most men with this mutated gene who get cancer will get prostate cancer or colon cancer, he said. The risk of breast cancer is very low, and only 1 percent of all breast cancers occur in men.