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Dancing with NED: Recurrent ovarian cancer is a life-or-death tango

Tuesday, September 03, 2002

By Betsy Kline, Post-Gazette Staff Writer

Every cancer survivor covets a long, slow dance with NED.

(Daniel Marsula, Post-Gazette)

NED is medical shorthand for No Existing Disease and it's the sweetest music a cancer patient can hear. Dancing with NED is the feeling of renewed vigor after months of chemotherapy-induced nausea and fatigue. It's the feel of the wind in a new growth of hair and a spring in feet that were once numb.

But for survivors of advanced ovarian cancer, the most lethal of the gynecological cancers, the dance is a game of musical chairs. Remissions end too quickly; recurrence is a way of life -- and death.

The statistics are grim.

The American Cancer Society estimates 23,300 new cases of ovarian cancer will be diagnosed this year; about 13,900 women will die. Only 25 percent of cases are diagnosed before the cancer has spread outside the ovaries; these women have a 95 percent chance of surviving five years. Most cases are not detected until stages 3 and 4, when the disease has spread; only 50 percent of these women will live beyond five years and 70 percent will face multiple recurrences.

Fighting recurrent ovarian cancer presents both the patient and her doctor with difficult choices. Long-term chemotherapy can prolong life by months or even years, but the quality of that life is compromised by multiple surgeries, sickness, weakness and possible organ failure. When do patient and doctor break from established protocols and test different drugs? When does a woman hang up her dancing shoes?

These are the stories of women who have chosen to fight and the doctors and researchers who are striving to give them better weapons to win the battle.


A will to survive

Carolyn Gardner loved her life as a second-grade teacher at Liberty School in Shadyside, where she lives. In June 1998, Gardner, then 49, was diagnosed with stage 3a ovarian cancer. After surgery to remove tumors followed by chemotherapy, she was in remission by January 1999.

While undergoing treatment, ovarian cancer survivor Carolyn Gardner of Shadyside is keeping busy helping to organize the Walk for the Whisper set for Sept. 15. (Robin Rombach, Post-Gazette)

"I spent all summer planning my classroom," Gardner recalls wistfully. But the chemo had taken its toll. "I only lasted three weeks. I went home and cried all night and by Saturday I was dry-eyed and knew I had to quit." That was September 1999.

She channeled her energies into fighting the disease on the nonmedical front. She became active in the local chapter of the National Ovarian Cancer Coalition, one of whose missions is to educate the public about the disease. She is now its community outreach director.

Then last summer, almost three years to the day after her initial diagnosis, she learned that the beast was back. Gardner underwent more chemo. She lost her hair a second time. By February it looked as though she was in remission again. But it lasted only four months.

"I found myself becoming bitter towards people who've enjoyed good health because this has been such as a struggle. In June I was envious of people still in remission. I was thinking of planning my funeral," Gardner says.

Instead, she got busy talking to other oncologists for second and third opinions and decided on treatment using different drugs. She joined a Bible study group and maintained an active social life.

"We [survivors] can't be consumed by ovarian cancer. We attend too many funerals. We have to do other things and be with other people."

Karen Bowers, 48, of Ross, also takes a proactive approach.

Diagnosed in June 1998 with stage 3c ovarian cancer, she is now fighting her third recurrence.

"I don't even think in terms of cure anymore. I just want a long remission," Bowers says matter-of-factly. She admits she gets impatient with doctors who favor doses upon doses of chemo drugs. She's had them all. The president of the local NOCC chapter wants to see more aggressive surgeries and "out-of-the-box" therapies focused on excising tumors and blasting away the microscopic remnants that sneak back as full-blown tumors.

 
 
Related articles:

Picking up the pieces after a diagnosis of ovarian cancer

Walk for the Whisper: If you go


PG staff writer Betsy Kline is a two-year survivor of advanced ovarian cancer. She wrote about her diagnosis, surgery and treatment in an Aug. 21, 2001 article, "My silent enemy: Ovarian cancer, cloaked in confusing symptoms, shatters a robust life"

   
 

Meanwhile, she rides a nightmare roller coaster. Her current treatment involves a drug called Doxil, which takes months to kick in. In the interim, she worries about her cancer spreading. It's scary. "It's not like me to break down in tears at the drop of a hat, but that's what it's like now," the former chemical industry sales rep says. Antidepressants help. "I measure my life in milligrams now," she says with an explosive laugh.

"It's my impression that the diagnosis of recurrence is in some ways more frightening" than the original diagnosis, says Judy Knapp, an oncological social worker at Magee-Womens Hospital. "It means the disease hasn't gone away and stayed away. These women know the implications of going back into treatments" -- the loss of hair or fingernails, rashes, persistent nausea, lack of energy and libido are all blows to one's body image.

Knapp has worked with ovarian cancer patients for 22 years, and she's seen women walk away to die on their own terms, and she's seen women fight.

The typical fighter, she says, is "a woman who has a strong ability to adjust to life's changes and lots of family and social support. A woman who has a deep spirituality or a strong set of religious beliefs. A woman who has roles in life to fulfill, such as mother, sister, employee or ovarian cancer advocate. It's about trying to reclaim parts of your life from the cancer experience. A sense of humor helps -- it gives you perspective."

Knapp shares the women's frustration. "For those of us in the health industry, the fact that ovarian cancer can be treated as a chronic disease is a huge step, but it's squat for the individual dealing with it."

Facts and frustration

Women with advanced ovarian cancer have an average life expectancy of three to four years, compared to one to two years a decade ago.

Dr. Jan C. Seski, director of gynecological oncology at Allegheny General Hospital, attributes the gain to improved patient care and better chemotherapy drugs. Women who are treated from the start by specialists in gynecological cancers also tend to survive longer,.

But the reality, says Dr. Holly Gallion, director of the Center of Excellence for Gynecological Cancers at Magee-Womens, is that better drugs and procedures usually buy a few years at most.

"The face of ovarian cancer has changed so much since I started in 1983," she says, citing the development of new chemotherapy and antinausea drugs. While women enjoy a better quality of life during treatment, Gallion says, most still face a fatal outcome.

Not only does long-term chemotherapy erode a woman's health, but the disease becomes more resistant to treatment with each recurrence, she says. About 80 percent respond to first-time treatments; that drops to 30 to 40 percent the second time; 15 percent in the third go-round. Remissions become shorter and more elusive.

So while doctors talk about treating ovarian cancer as a chronic disease -- keeping it under surveillance and controlling it with continuous treatment much like asthma or diabetes -- survivors are not as enthused.

Gardner feels that the "chronic" label gives women "a false sense of security. It is only chronic as long as the chemo works."


Research and clinical trials

The thrust of most ovarian cancer research today is two-pronged: better screening to catch the disease early and more effective and less debilitating treatments for recurrent disease.

Dr. Holly Gallion, left, talks with chemotherapy patient Carole Scaife of Mundy's Corner at the Women's Cancer Center at Magee-Womens Hospital. Scaife was diagnosed with ovarian cancer this spring. (Martha Rial, Post-Gazette)

Unlike cervical cancer, which can be detected early by a routine Pap smear, ovarian cancer does not have a reliable early detection test. The reason so many cases of ovarian cancer are caught late lies in the vagueness of the symptoms -- pelvic pain and/or abdominal swelling, bloating and indigestion, pelvic pressure, persistent fatigue -- which often don't show up until the disease has progressed beyond the early stages. Hence its nickname: the "whispering" cancer.

But there is happy news on the horizon. A new early detection blood test using spectrometry has shown 94 percent accuracy in early trials vs. less than 10 percent for the cancer antigen (CA125) test now used in conjunction with ultrasound (for a total 20 percent accuracy).

Researchers around the world are testing new chemo cocktails and techniques. The major stumbling block is toxicity. Just how much can a body ravaged by cancer, surgery and harsh drugs take?

Cyndee DePastino, 44, of Monroeville gave a clinical trial a shot, with mixed results.

First diagnosed with stage 3c ovarian cancer in April 2000, DePastino underwent nine rounds of chemo and achieved clinical remission that September. But in December 2001, her doctor found five new tumors and her life slipped back into crisis mode.

Despite severe allergic reactions to standard chemotherapy, she enrolled in a clinical trial for a new drug combination. It was rough, but after two treatments, her tumors shrank dramatically. But the next two treatments did nothing except exacerbate her side effects. Sick and miserable, she dropped out of the trial.

"I'm really conflicted about it," she says. She has some hard decisions to make about further treatment vs. quality of life. "I'm a realist," she says. "I have an appointment with my lawyer. I have plans to go to a funeral home ..."

She cheers up at the thought of her only grandchild, Andrew, born July 21. "I want to live. ... I want to enjoy that grandbaby."


Research and hope

Chemotherapy is not the only route to remission.

Gallion points to Intensity Modulated Radiation Therapy as holding some promise. Conventional radiation delivers large doses of radiation to localized abdominal tumors, but has been very limited in combating ovarian cancer, which tends to be more difficult to pinpoint. IMRT is much more precise.

Dr. David Bartlett, director of surgical oncology at the University of Pittsburgh Cancer Institute, is using hyperthermic chemo perfusion for patients with few options left. The high-risk procedure combines surgery to remove tumors and high doses of chemotherapy directly to the affected area while heating the abdominal cavity. The combination of heat and chemo delivers a knockout punch to residual cancer cells.

"I tell patients that the surgery itself is a tough one, but people who have been through chemo know what it's like," Bartlett says.

Alice Fox was 46 and symptom-free when a routine checkup detected her stage 3 cancer in 1995. The Hunker, Westmoreland County, wife and grandmother had been in almost continuous treatment since then. "You name it, I was on it," she says today. Some of the drugs worked for a while and then quit.

In December, she was told she had one more shot and that his name was Dr. Bartlett. "I was scared. I was told that if I chose not to have this procedure I had a year, maybe a year and a half to live. It was a tough decision."

She had the surgery Jan. 16. It lasted 12 hours and recovery was slow. Eight months later, Fox says, "I feel great. I have done more physical work in this past summer than in the past seven years."

She knows she's not out of the woods, but she's optimistic. "If this procedure doesn't work for me, I know there's something else out there."

That something else could be gene therapy, therapeutic vaccines or antiangiogenic agents that cut off the blood supply to tumors. All are still in the research phase.

In a phase 2 clinical trial involving ovarian cancer patients at the Western Pennsylvania Cancer Institute, Dr. Gregorio Delgado, chairman of the Department of Obstetrics and Gynecology at West Penn Hospital, and Dr. John Lister, director of bone marrow transplantation, are investigating a controversial procedure combining bone marrow stem cell "rescue" and nearly lethal doses of chemo. Healthy stem cells are harvested and then transplanted back into the body to restore bone marrow destroyed by the chemo.

Delgado says that so far the response rate is good and the toxicity has been tolerated. Skeptics of the procedure point to the low quality of life during the treatment.

The fact that new therapies for ovarian cancer are being studied and applied is reason for optimism.

"Everybody talks about breast cancer; nobody wants to talk about ovarian cancer because it's so lethal," observes Carolyn Gardner.

But that is changing. Slowly.

"Ovarian cancer has never had much of an advocacy group, until now," says Magee's Gallion. As survivors stay alive longer, "they're becoming more militant," she says.

All because they don't want the music to stop. They're all hoping for a long, slow dance with NED.


Betsy Kline can be reached at bkline@post-gazette.com or 412-263-1408.

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