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Couple Adjusts Mindset After Cancer Diagnosis

CancerWise - February 2007

By Renee Twombly

Peggy is an expert in trauma. As director of the surgical education program at Tulane University Medical Center, she teaches people how to help those in life-threatening distress.

But nothing could have prepared her to deal with recent crises that have turned her life upside down, robbing her of community, home and even intimacy.

Just as Peggy, 53, was recovering from a debilitating autoimmune disease, she met a man with whom she wanted to share her life. But within weeks she developed cancer that compromised her ability to be physically intimate. Just as she was dealing with the diagnosis, Hurricane Katrina ripped apart her home in New Orleans, and she must now commute four hours each day to her job.

She wins the rare-disease jackpot

But this New Orleans native is a survivor. She says with a laugh that the disorders she has been diagnosed with, Takayasu arteritis (an inflammatory condition of the heart aorta) and the cancer (Paget’s disease of the vulva), make her a jackpot winner in the rare diseases category.

“I should go out and buy a lottery ticket,” she says.

Communication is vital

She also says that her fiancé, Gary, has helped her through it all by staying positive and understanding that it is best not to “fight” a disease as much as to learn to live with it.

“Communication and understanding are key to our happiness together,” Peggy says.

Peggy had a stroke, heart blockage and chest pain before an astute physician and colleague made the diagnosis of Takayasu arteritis. For several years she took massive doses of drugs, but finally the therapy was a success and she was tapering off the last medication.

Detour halts return to health

With the prospect of returning health, Peggy decided to make some changes in her life, and that involved attending a new church. It was there she met Gary.

But within weeks, in September 2004, she noticed a little red mark in her genital area, on the outside of the labia folds, which her gynecologist said was a heat rash. Peggy didn’t think that was the case and asked for a biopsy.

'This is a terrible cancer'

When the results came back, her doctor said she just needed to get a little surgery in a few months to remove the lesion, which he said was Paget’s disease of the vulva. Not knowing what that was, Peggy asked an associate to do a little research. Within 15 minutes, he was back in her office. “This is a terrible cancer. Who has this?” he asked.

Peggy soon discovered that oncologists at M. D. Anderson have experience in treating the rare cancer. On a Friday, she called Thomas Burke, M.D., executive vice president and physician-in-chief, as well as a professor, in the Department of Gynecologic Oncology. The following Wednesday she had surgery. The cancer wasn’t invasive, and Burke removed all of it and most of the surrounding tissue. But the possibility remains it may resurface years into the future.

The surgery wasn’t disfiguring, Peggy says, but it can make sex painful.

Pair rethinks life and love

Last fall, Peggy and Gary attended Anderson Network’s Living Fully With and Beyond Cancer Conference for patients and caregivers. The insight she walked away with has helped her in all aspects of her disease.

“I didn’t know until then that cancer could be considered a chronic disease,” she says. “I thought of it as black and white -- that you had to fight the disease if you didn’t want it to come back – and that causes a lot of stress. But if you know it is chronic, you have to respect what it is and deal with it.”

Couple learns to live with challenges

That mindset works with intimacy issues as well, she says.

“I was trying to force a return to sexual health rather than recognizing this is just another day and understanding and forgiving myself if things don’t go as I plan.”

It also helps that the couple is “real open with each other,” and that Gary is “not judgmental and will not dwell on the negative,” Peggy says. “He brings out the positive, and so … you know … I did win the jackpot, but in a good way.”

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© 2015 The University of Texas MD Anderson Cancer Center