SMOKINCHOICES (and other musings)

March 6, 2013

Unique cancer survival

‘Capital Style’ special report

F I G H T I N G    F I R S T

By Kristy Eckert • CAPITAL STYLE

After Tonya Dixon tested positive for the hereditary gene mutations that cause breast and ovarian cancer, the Columbus elementary-school teacher went on the offensive. She chose to fight first, voluntarily asking doctors to remove her ovaries, cut off her breasts and rebuild her chest. For nearly two years,    Capital Style magazine followed her emotional journey — one that an increasing number of women are taking.    Read a companion to the Capital Style story on Page A6

                                                                               WILL SHILLING CAPITAL STYLE

 COVER STORY

Mother’s death set the stage for woman’s assault on cancer

By Kristy Eckert • CAPITAL STYLE

Seven-year-old Tonya Dixon stood in her pajamas and peered out the window, her older brother and sister beside her, all awakened by the sound of sirens. Paramedics strapped their mother to a gurney, and the ambulance whisked her away. • When doctors sent her home for her final days, friends took round-the-clock shifts to sit with the woman in too much pain to sleep. • Ovarian cancer had poisoned her at 37. • It killed her at 38. • And Tonya’s hurting heart told her young mind that, someday, cancer would kill her, too. • Eventually, genetic testing confirmed her fears: Tonya had inherited the mutated genes that dramatically increased her chances of developing ovarian and breast cancer.

The Mishler family gathered in 1977 for their last portrait together before Tonya’s mother died. Clockwise from top left, they are: Maury, RuthAnn, Tonya, Mikala and Brian. Tonya’s brother and sister also have tested positive for the cancer gene. FAMILY PHOTO

Her chances of developing ovarian cancer at the time? Between 40 and 60 percent, according to Ohio State’s Arthur G. James Cancer Hospital. Her chances of developing breast cancer? Between 50 and 85 percent.

So she chose to fight first.    In a radical and somewhat controversial move, Tonya — an elementary teacher and active wife and mom in otherwise perfect health — voluntarily asked doctors to remove her ovaries and her breasts.    “I just thought (cancer) was part of my destiny in life,” said Tonya, who is now 42 and lives on the Northwest Side. “Why should you live your whole life in fear? You can make a choice before a choice is made for you.”

*                               *                              *

Doctors don’t know exactly how many Tonyas there are — how many healthy, cancer-free women have tested positive for these hereditary mutated genes and opted for voluntary ovary and breast removal to reduce their risk. But they agree the number is growing rapidly.    Most women who test positive for the mutated gene remove their ovaries at doctors’ strong recommendations, because ovarian cancer is difficult to detect and kills quickly, researchers say.

Whether to remove one’s breasts — which some in the medical field feel is too extreme — becomes a tougher decision. More aggressive screening, most experts agree, is an effective option.    But genetic counselors from Harvard to Columbus see a pattern: If a woman has watched cancer attack someone she loves, she yearns for a peace of mind sometimes only achieved by taking a dramatic step to try avoiding the disease.   

Accurate data are almost nonexistent as hospitals determine how to track this still-new situation. But Timothy Rebbeck, a professor at the Perelman School of Medicine at the University of Pennsylvania and national expert on the topic, thinks that based on the research available, about 20 percent of American women who test positive for the gene choose to remove their breasts.

Genetic counselors at Ohio State and OhioHealth say that based on their experiences, the percentage has skyrocketed locally in the past couple of years, to as high as 50 percent.    Regardless of how people choose to better defend themselves, medical experts say, they feel the science is a gift.

“If you find out you have a gene for cancer, there is so much you can do,” said Heather Hampel, a genetic counselor and Ohio State’s associate director of the division of human genetics. “I feel like it’s a gift to them. I feel like we can save these people’s lives.”    Tonya Dixon did not know as her journey began that it would include five surgeries and span nearly two years. But after long believing that cancer would take her from her children the same way it took her mother from her, she is confident in her decision. So is her husband, Danny, who lost his mother to breast cancer and fully supported her choice.

WILL SHILLING CAPITAL STYLE    Tonya prays in the summer of 2011 before surgery at the James to remove her ovaries. She is flanked by her husband, Danny, left; sister, Mikala Roth; and father, Maury Mishler.

“I feel so fortunate that it’s a choice I can make — that nobody else is making it for me,” Tonya said.    Tonya’s children — Korinda, now 12, and Garrett, now 7 — can’t yet fathom the pain, both physical and emotional, that has gripped their mother the past two years.    They didn’t watch her lying on an operating table at the James with craters in her chest where her breasts once were. They didn’t feel her depression when a post-surgery infection chained her to an IV for six hours a day. They didn’t see their mom — the one who bakes cakes for half-birthdays and doesn’t miss a dance recital — sit in the car with their dad one dark, frustrating night, and sob, questioning her choice.    And Tonya doesn’t want them to fathom it.

She only wants to be here — and to hope that if her daughter does inherit the same genes Tonya inherited from her mother, that there’s an easier answer.    “Why did you go to the doctor today?” Korinda asked her mom one day.    God, Tonya prayed, give me the words.    “I’m not sick. I’m not sick at all,” Tonya told her. “But I’ve got some stuff inside of me, and if I don’t get it taken out, it could make me sick someday. So I’m getting it taken out.”

“Do you think I have it?” Korinda asked.    There’s a 50 percent chance she does, medical studies show. But Tonya couldn’t say that.    “By the time you find out,” Tonya said, “they’ll have new ways to fix it.” keckert@capital-style.com      @kristyeckert

(My Comment:   

This is a success story for Tonya Dixon and her family, but she has paid an enormous price for her victory.  To one such as me, it is heartbreaking and wrenching to think about.  But I have not walked in her shoes, nor grown up believing that my mother’s fate was to become my own – – a grievous death by cancer with no relief from torment and all the emotional loss which  colored her life.     (If thy eye offend thee – pluck it out)

I have spoken of this before with regard to genetic testing which many consider dramatic advance for medicine and seen as a positive.  In my mind there is just a little too much of the fox and the hen house thing running around, because I have seen the passion with which the medical complex can present such offerings in the best possible light as a smart choice.   But this is not the place or time that I would choose to berate the entire medical complex for it’s insane drive toward ever increasing profiteering.

As I have said and still believe, it is better to take action which can bring peace of mind than to sit in fear and await the worst.  For it will surely come, one way or another.   Belief becomes reality.  .  .  .  or,   as above, so below.  Perspective and state of mind is large and relevant – – should never be belittled;  it is as real as the nose on one’s face.  And to fear anything, gives it power.

But there are other choices,  so many other choices, and each of us are totally free to choose and do as we feel best.   I am happy for Mrs Dixon and her family and the security they have found.    Jan)

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