After Beating a Rare Cancer, Mother of Two Advocates for Cancer Causes
As a volunteer grant reviewer for the American Cancer Society (ACS), Kristin Reilly, 36, helps decide which research projects receive a share of approximately $100 million in annual ACS funding. Although she’s completed a rigorous training program to learn how to evaluate grant applications, she has no formal scientific background. What she brings instead is her personal perspective as a cancer survivor and a determination to give a voice to the thousands who struggle as she once did.
It took a while for Kristin, who lives in Richboro, to find that voice. In 2005, she was pregnant with her second child when she began experiencing symptoms of what her OB/GYNs told her was a yeast infection. “Every month, I’d leave the doctor’s office with a different kind of remedy to help with the constant itching, burning and discomfort,” she says. “But I knew deep down that it wasn’t going away.”
She also realized that her doctors weren’t doing a thorough evaluation. She knew that the problem involved her vulva, or external genitalia. But during her prenatal visits, her doctors focused on internal exams. They weren’t seeing what she was describing, which included redness and a toughening of the skin, making it feel “like a rubber band” to the touch.
BE YOUR OWN ADVOCATE
Vulvar cancer affects about 4,500 women
in the US annually, according to the
American Cancer Society. Risks include
exposure to the human papilloma virus
(HPV), age (more than half of these cancers
occur in women over age 70) and smoking.
“The key to diagnosing this cancer early is
self examination,” Dr. Shahin says. “Women
need to become comfortable with looking at
their external genitalia and seeking advice
from their gynecologist if they notice any
redness, discharge or discoloration of the skin.”
“Just as you would advocate for others,
like your own children, you need to be your
own best advocate,” Kristin adds. “If you feel
something is wrong, keep asking questions
and make sure you receive a thorough
evaluation. Nobody knows your body
like you do.”
At eight months pregnant and feeling no relief, she decided to shave her pubic hair completely to give her doctors an unobstructed view. And finally, they realized that they had indeed been missing something. A biopsy of her vulva confirmed the presence of precancerous cells.
Treatment was delayed until after her child was born in July 2005. In October, she went to Abington Memorial Hospital for what she thought would be a minor procedure. “I’d been told that the abnormal cells could be removed through laser surgery,” she said. A few days later, though, she received the news that the condition was more advanced than previously thought – it was fully developed cancer, and she’d need to undergo a more extensive operation.
“I was still sitting on a pillow, recovering from my last procedure, and I was thinking that I couldn’t go through that again,” she says. “I was scared to death.”
The one bright spot was meeting the surgeon who then took over her care. Mark Shahin, MD, Chief of Clinical Gynecologic Oncology at the Hanjani Institute for Gynecologic Oncology at Abington, had been called in to consult on her case. When she met with him, he immediately put her at ease, even while acknowledging that her case was unusual.
“Dr. Shahin was very honest with me and told me that this was a type of cancer usually seen in older women,” she says. “He said that the surgery would be challenging, and treating me would be a learning process for him.” His openness earned her respect. “I felt that he was very invested in my care, and he wanted my surgery to be a case he would be proud of.”
“Kristin had vulvar intraepithelial neoplasia (pre-cancerous lesions) in addition to areas of invasive cancer close to the clitoris,” Dr. Shahin says. “In an older patient, we would have recommended a radical vulvectomy – removing the tissue down to the pubic bone, along with a lymph node dissection. However, in her case, it was particularly critical to try to preserve feeling and function.”
In January 2006, Dr. Shahin performed a right anterior partial radical vulvectomy, an extraordinarily difficult procedure aimed at removing the cancer while leaving the nerves and healthy tissue intact. Surgically, it was a success: The post-operative pathology report showed that the cancer was gone, and Kristin would not need chemotherapy. But a grueling recovery was just beginning.
She does not sugarcoat the details. “It was weeks of excruciating pain, followed by months of discomfort,” she says. But gradually, she began to heal. “The first day I thought, ‘Today was a good day’ was Easter Sunday,” – almost four months after her surgery.
Throughout her recovery, Dr. Shahin was a reassuring, steadying presence, attending to her emotional needs as well as her medical ones. “Dr. Shahin wanted to see me be a whole person again,” Kristin says. “At one appointment, when I broke down crying in his office, he told me he’d block out as much time as I needed.” He also helped connect her with therapists, support groups and a fellow gynecological cancer patient.
“I actually looked forward to my visits with him,” she says. “I felt like every time I went, I’d come away with peace of mind.”
Today, Kristin has found her place in “Cancer World,” as she calls it – as an advocate, speaker and grant reviewer. She’s also a mother of two, wife and full-time mortgage consultant, which makes for a packed schedule. But she wouldn’t change it for the world.
“I feel that one person can make a difference,” she says. “I don’t want my children to be faced with cancer, and I feel that my advocacy is one of the most important things I can do as a mother.”