A Glimmer of Hope on Butterfly Wings
September is Ovarian Cancer Awareness Month: Time to note advances in treatments and cherish memories of women lost to a complex, difficult disease
By Linda H. Lamb
It’s a moment everyone describes as magical. Five hundred butterflies suddenly aloft in the heart of Columbia, carrying on their fragile wings the weight of so many hopes and memories.
When the butterfly release happens again on Sept. 21 – sponsored by the Ovarian Cancer Coalition of the Midlands – Donna Jumper will be remembering her late sister, Columbia businesswoman Cathy Novinger, who organized the coalition during her spirited fight against the disease.
“We were very close; we did so many things together,” said Jumper, recalling sisterly spa days, trips to the mountains and shared family vacations.
But Jumper and others who admired Novinger are doing much more than just remembering her. They are working to raise awareness of ovarian cancer, which is expected to kill more than 14,000 women in the U.S. this year and is still maddeningly difficult to diagnose at an early stage.
“Finding it early is what saves lives – with any cancer,” Jumper said. But according to the American Cancer Society, only about 20 percent of ovarian cancer cases are found at an early stage.
Still, noteworthy advances in treatment and diagnosis are helping to guide women who are at higher risk for ovarian cancer and help those who are living with it.
“More people are being treated and experiencing disease-free remissions,” said Debbie Seale, director of Oncology Services for Palmetto Health and a member of the coalition’s board of directors.
“People are living longer after their diagnosis,” she said.
An elusive threat
Endless anecdotes illustrate the devious elusiveness of this disease. One woman was diagnosed by chance during an X-ray following a car wreck. In another case, a routine colonoscopy was halted by what turned out to be massive ovarian tumors. Another woman was mistakenly treated for supposed digestive disorders as her hidden malignancy grew.
No reliable screening is advised for women who are not known to be at high risk for ovarian cancer. A woman might not even suspect that she is at high risk, unless a close relative has already suffered from ovarian or breast cancer.
Ovarian cancer can have symptoms, of course. They might include bloating, abdominal pain, fatigue and urinary symptoms. But many of these are not unusual after menopause, which is when most ovarian cancer occurs.
A biomarker or “tumor marker” blood test, CA125, can help doctors assess the disease. But it is not recommended for general screening because of the risk of false positives.
“There’s a lot of research going on,” said Helen Fields, executive director of the Greenville-based South Carolina Ovarian Cancer Foundation. “But it never seems to produce that breakthrough that we’re looking for.”
The detection dilemma explains the urgency behind advocacy groups’ efforts to raise awareness. The Coalition has funded billboard campaigns, for example, and the Foundation promotes awareness among medical and nursing students.
Seale and Julie Dawson, a Palmetto Health nurse navigator who specializes in gynecologic cancer patients, stress that while ovarian cancer symptoms might sound common, women need to pay attention to them.
“Look for two or more symptoms that persist over a two- or three-week period,” Dawson said. “Something that’s different for that particular person.”
Better treatment paths
Fields has hopes for research that’s happening now, including tumor-generated vaccines that aim to prevent cancer from recurring. But she and other advocates agree that the most life-changing developments over the past decade involve genetic testing.
Genetic testing was relatively new when Cathy Novinger was diagnosed with Stage 3 cancer in 2005. Remarkably, she lived another 11½ years after being told she wasn’t likely to survive five, while enduring chemotherapy, radiation, immunotherapy – and thanks to what friends describe as an intrepid will to keep going.
Novinger tested positive for BRCA2, one of the genetic mutations linked with higher risk for ovarian and breast cancers. While Novinger never actually went into remission from her cancer, the fact that her sister, Susan Jumper, also tested positive for BRCA2 has enabled her to fight a very different kind of battle.
Ten years ago, at age 45, Jumper had a complete hysterectomy, including removal of her uterus, ovaries and fallopian tubes. It was strictly preventative. Every six months she has either a breast MRI or a mammogram. As an additional preventive measure, she takes Aromasin, which blocks the action of the hormone estrogen and has been found to prevent breast cancer in some high-risk women.
It’s a good example of how genetic testing can reveal risks and enable people to take action. In fact, genetic testing now is routine with an ovarian cancer diagnosis. Only a small proportion of ovarian cancer patients have a BRCA mutation, but other targeted therapies are being used in other scenarios, such as in women whose cancer has recurred.
“Really, having this knowledge gives you a whole different path to go down,” Jumper said.
Support and nurturing
Just about any cancer diagnosis turns a person’s life upside down. Ovarian cancer, with its late diagnoses and high rates of relapse, might do that more than most, heightening the need for education and support.
Most women will have surgery to debulk tumors, followed by chemotherapy. Sometimes chemotherapy comes first, to shrink tumors in advance of surgery. Advocates urge patients to seek out a surgeon who specializes in gynecologic oncology.
Nausea and other challenges of chemo have been well-documented, along with dread of spending the rest of one’s life in “cancerland.” But Dawson, the nurse navigator, said that as treatments improve, she increasingly sees women who rebound from difficult therapies and multiple surgeries.
“A lot of them do well for a long period of time,” she said.
The S.C. Ovarian Cancer Foundation lavishes special attention on newly-diagnosed patients. It sends – or a volunteer delivers – a “bag of hope” loaded with goodies geared to the needs of someone who’s about to undergo chemo. They include an insulated water tumbler, comfy slipper socks, a hand-knitted cap, a journal, an invitation to monthly survivor luncheons and ginger treats that might help with nausea.
Fields said many patients are eager to share their experiences to encourage others. “It really helps to meet a woman who says she is a 10- or 15-year survivor,” she said.
Both the Foundation and the Coalition offer speakers for community organizations, and their fundraisers and awareness events draw participants from across the state (see box for details).
In Columbia, the butterfly event takes just 30 minutes, but the experience lingers, Dawson said.
“It’s an uplifting feeling to know that everyone there is supporting the same thing,” she said. “And there are always some butterflies that light on people … there’s a feeling that even though some of their loved ones are gone, their spirits live on.”