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How one woman became a cancer ‘pre-vivor’

Friday, May 4th, 2012 | Posted by | one response
Joelle Burnette (Photo by Crista Jeremiason/ Press Democrat)

MARIE THOMAS McNAUGHTON / TOWNS Correspondent

The challenge of reading put-it-out-there blogger Joelle Burnette’s self-published, tell-all book is knowing that she is going to bare all: her dilemma, her choices, her consequences.

Titled “Cancer Time Bomb, How the BRCA Gene Stole My Tits and Eggs” and carrying a graphic cover illustration by Burnette, the 300-page volume asks the soul-searing question, should one cut out healthy parts of one’s body to forestall a potentially early death?

Burnette has been baring her soul on the Internet for several years. The new book (bad words and dark thoughts included) is intended mostly for women facing mastectomies and charts her extended family’s journey through cancer hell.

Having learned in 2008 that she had a greater than 90 percent probability of developing cancer, Burnette chose, at the age of 42, to have her ovaries, Fallopian tubes and breasts removed before the disease could take hold.

“At first, it was an obvious decision to make,” she said. “I wanted to be here for my husband. I had two kids I wanted to be available for. So I wouldn’t be able to have any more kids. So I would be mutilating my healthy body. So I could still develop cancer somewhere else.”

Maybe it wasn’t so obvious after all. A big part of Burnette’s book is learning about the specters that haunt her Jewish family. In 1978, her 19-year-old sister Renee was killed in a car accident.

In 1994, Burnette watched her 32-year-old sister Michelle develop Stage III cancer in the months between finding a lump and convincing her insurance company to do a biopsy. Michelle survived a painful mastectomy, vomitous chemotherapy and a death-defying bone-marrow transplant.

But in 2008, a completely unrelated cancer developed in Michelle’s remaining breast. When she told doctors that a paternal grandmother and aunt had died of breast cancer and a cousin had survived it, the mutated BReast CAncer (BRCA) gene became starkly visible.

Everyone has so-called BReast CAncer genes, and when they work properly they suppress tumor growth. In some ethnic groups, though, especially Jews of Ashkenazi descent (from Central and Eastern Europe), one or more have mutated in such a way that they allow tumors, especially in the breasts and ovaries, colon and prostate, to form and grow so quickly that early detection is nearly impossible.

This mutation was discovered in Michelle’s blood as well as her father’s. As Michelle successfully battled cancer for the second time, Burnette was badgered by her family until she also was tested.

Her blood also revealed the mutation, and relatives began to pressure her into prophylactic surgery. For them, another death in the family was unthinkable if it could be prevented.

Finally Burnette was convinced that having her ovaries and Fallopian tubes removed was a “no brainer,” given that she already had two children and faced 1-in-3 odds of developing ovarian cancer.

But in November 2008, the ovarian operation was so emotionally difficult that she postponed the double mastectomy that had been scheduled for the same day.

“I had already sent myself into early menopause and all that goes with it, at 42,” she explained. Why go on to disfigure her body?

It took another six months of reflection and fitness training before she felt strong enough to have her healthy breasts removed.

Of the options available, Burnette chose the controversial transverse rectus abdominis myocutaneous or TRAM flap surgery. This involves moving abdominal muscle to the chest to replace the cancer-prone breast tissue, instead of remaining flat-chested or receiving implants.

At 46, Burnette has regained her sense of humor, saying the side-effects of that surgery were a figure enhancing tummy-tuck and the urge to scratch what was once one’s stomach in socially inappropriate ways.

No matter how angry, bitter, profane, hopeful and crazy-brave her book reveals the former Towns correspondent to be, Burnette never reneges on her promise to tell the truth to women who share the same gene mutation or who are otherwise facing radical breast surgery.

Instead she embraces the opportunity to make a “mitzvah,” to do a good thing for those who need to know, and those of us who care to know, the intimate, uncomfortable details of her painful, no-guarantees journey.

“Cancer Time Bomb” is available in print and electronic versions at Amazon.com, amzn.to/IEfX5K.

For clinical information about BRCA cancer risks, visit cancer.gov or FORCE.org.

EXCERPT

Early in “Cancer Time Bomb,” Joelle Burnette recounts the day she was told whether or not she carried the BRCA gene mutation.

The stress that had been building up over the past few months was about to culminate in this poorly chosen battle with my (7-year-old) daughter. I rose from my chair, walked over to her and grabbed her chin to secure her gaze only inches away from my face. I growled through my words.

“”Today is not the day to act this way. . . . The lady I’m seeing today is going to give me one word that will change everything in my life and affect you and your brother. One word. That’s all she’s going to need to say to change everything. Do you understand?”

Of course she didn’t understand.

 

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Nick Walden is our Cotati and Penngrove correspondent.
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