The silent disease no more
Ovarian cancer survivor recounts story, advocates awareness
by ELIZABETH TAUFA Reporter

"He adds such enormous joy," said the beaming grandmother of Roman, 17 months.

Chrystine Tedeschi is alive.

That might not seem to be any great feat to many people, but Tedeschi never takes it for granted.

"I'm a very grateful, contented person," said the Amherst resident, a nine-year survivor of ovarian cancer.

The former Lancaster High School teacher had been dealing with persistent fever and lower abdominal pain and bloating before her diagnosis in 1998.

"I kept calling my internist with my symptoms, but I was never told to come in," she said.

Tedeschi finished her current school year and made an appointment with the internist anyway. She was diagnosed with ovarian cancer almost immediately.

"I was diagnosed on Monday, and my internist made an appointment to see a gynecological oncologist on Wednesday, and I was in surgery on Friday," she said. "So I was given Thursday to prepare."

"Preparing" included visiting with family and friends and meeting with an attorney to discuss a living will and health care proxy.

"My family loved me through this," said ovarian cancer survivor Chrystine Tedeschi, standing left. Pictured with her, clockwise, are daughter-in-law Joyelle, son Jason, grandson Roman and husband Richard. Photos by Joe Eberle. Purchase color photos at www.BeeNews.com

"I just felt like I shouldn't have had to do this at this stage in my life," she remembered.

After the surgery, Tedeschi began a long recovery involving different rounds of chemotherapy and rest. Her last treatment was Jan. 13, 1999.

"I was completely bald and had no eyebrows or eyelashes," she said. "I joked with my son that I was his 'Star Trek' mom."

About 20,000 women are diagnosed with ovarian cancer each year. Around 15,000 women die from the disease each year.

Currently, 55 percent of the women diagnosed with ovarian cancer die from it within five years. When diagnosed in the advanced stages, the chance of five-year survival drops to about 30 percent.

Diagnosis is difficult because the symptoms - including bloating, pelvic or abdominal pain, difficulty eating, feeling full quickly and urinary symptoms (urgency or frequency) - are often equated with other medical problems.

Tedeschi's long survival is a rarity.

"One reason there's not as much awareness about ovarian cancer as there is for breast cancer is because fewer women are diagnosed," Tedeschi said. "But also there are fewer women who survive it, so there aren't many of us around to be advocates."

After recovering, she went back to teaching at Lancaster High School for three years, but something seemed to be missing.

"I started to feel that I needed to give back," she said. "I was too young to retire, so I quit after 25 years."

Tedeschi now keeps her life busy by devoting her time to her church, volunteering for the national hotline for the Nation Ovarian Cancer Alliance and working as a patient advocate at Millard Fillmore Suburban Hospital.

"I visit every patient's room, but if it's a cancer patient, I find some way to bring up that I'm a cancer survivor, and I've had some of the most incredible experiences," she said. "I actually got to talk to one patient right before she went into ovarian cancer surgery."

But Tedeschi hasn't given up teaching completely. She is a member of Survivors Teaching Students, an educational program for medical, nurse practitioner and physician assistant students that takes real ovarian cancer survivors into the classroom.

"We go into third-year medical student classrooms at the beginning of their gynecology rotation," she said. "I give a lecture on the signs and symptoms, and then after the lecture, the survivors recount their personal chronological stories, and we open it to questions."

The purpose of the program is to begin educating medical students on how to diagnose ovarian cancer before it moves to the advanced stages of the disease while at the same time giving a face to the malady.

"They love it," she said of the students. "It's important to open the dialogues and let them see the disease from the patient's perspective."

"It's always more powerful to hear it from a first-hand source than to read it from a textbook," said one student in a presentation evaluation.

"Up-to-date information and realistic hope are probably the two most important parts of the doctor's reaction and evaluation of early symptoms," said another. "Knowing this, I will change the way I will interact with patients."

Regarding education for professionals, it seems to be working.

first national consensus statement the Gynecologic Cancer Foundation, the Society of Gynecologic Oncologists and the American Cancer Society on ovarian cancer has been issued and is changing the face of diagnosis and research. " Historically, ovarian cancer was called the 'silent killer' because symptoms were not thought to develop until the chance of cure was poor," the statement said. "However, recent studies have shown this term is untrue and that symptoms are much more likely to occur in women with ovarian cancer than

women in the general population."

The statement goes on to note that "women with ovarian cancer report that symptoms are persistent and represent a change from normal for their bodies. The frequency and/or number of such symptoms are key factors in the diagnosis of ovarian cancer. Several studies show that even early-stage ovarian cancer can produce these symptoms."

"They used to say that ovarian cancer was a silent disease," Tedeschi said. "It's not true. Obviously, the doctors are just not educated about it. It's much more curable."

While Tedeschi's advocacy and volunteer work have allowed her to fill up her days fighting the disease that almost killed her, her true joys are her family, including her husband, Richard; her son, Jason, and his wife, Joyelle; and her grandson, Roman.

"The joys I've had are so much bigger after cancer," she said. "I didn't know that I'd live to see my son get married or that I'd be a grandmother. They add such enormous joy to my life."

e-mail: etaufa@beenews.com