Tuesday, October 05, 1999
Fighting ovarian cancer
Westwood woman wants to raise volume on 'whispering disease'
BY SUE MacDONALD
The Cincinnati Enquirer
Among women's health advocates, ovarian cancer is often called the “whispering disease” because its symptoms can be so subtle, so silent and so insidious.
So please forgive Vickie Lamb of Westwood if she feels like shouting.
From personal experience, she wants wants other women to understand that cancer of the ovaries is survivable — but not something to ignore.
“I'm an ovarian cancer survivor, and women need to know this disease,” says Mrs. Lamb, who was diagnosed in 1996 at age 39 and is now coordinating the area's first support group through the Wellness Community for women with ovarian cancer.
Her zeal for a local support group is fueled by a desire to provide what she so desperately wanted — local information, local support and local resources while she was battling the disease. Lacking those three years ago, she turned to the Internet and national organizations to help her through treatment and recovery.
“First of all, I thought I was going to die,” she says. “I didn't know anyone who was an ovarian cancer survivor. But then I found the Conversations newsletter on the Internet and I called the woman behind it. She told me, "We are 500 sisters strong,' and that was such good news to me.”
Mrs. Lamb hopes the Ovarian Networking Group she's heading up will help women find the information they need about diagnosis, treatment and survival of ovarian cancer, one of the leading gynecological cancers among women and the most deadly.
Ovarian cancer accounts for 4 percent of all cancers among women, affecting about 25,200 women each year. About 14,500 die from it each year.
The Ovarian Networking Group had its first meeting in late September, mostly attended by women who have the disease or are cancer survivors. Also on hand were several husbands and boyfriends.
“It was like medicine for me and everybody there,” Mrs. Lamb said. “What I found is that there are women, faces, names behind the disease. That's who I want to connect with. That's how this whole thing got started.”
Claudia York, a 43-year-old food buyer from Landen, attended the first meeting and found “that we aren't alone, that there are a lot of us out there, that we're all so normal.”
Now in her second round of chemotherapy, Ms. York was diagnosed in August with ovarian cancer, and feels confident that her young age and treatment will help her survive. Ovarian cancer is most common in women after age 50.
“This is the only time since I've turned 40 that I've been considered young,” Ms. York jokes. But the cancer is not a laughing matter, she says.
“It's a very mysterious disease, very evasive and illusive, and very aggressive, unfortunately,” she says. “It changes things, because now my daughter, who's 19, will have to be tested every year. She's now considered at high risk for ovarian cancer.”
Heather Henry, a University of Cincinnati graduate student, and her mother Marcia Henry, of Kenton County, also found tremendous support at the meeting. Marcia is being treated for ovarian cancer, and she sought out a support group at her daughter's urging.
While taking an art therapy class together in Houston, where Marcia, 52, underwent cancer treatment earlier this year, “I realized she had a great emotional need for a group like,” Marcia says. “I have friends who are cancer survivors and they have been right here with me and very supportive, but my daughter's friends have no idea what we go through as a family. It is really at her instigation that I came back to Cincinnati and looked for a group in this area.”
Victims need each other
Typically, ovarian cancer is treated by a combination of surgery, chemotherapy and radiation, and doctors say women need as much information as they can get.
“The formation of a support group for ovarian cancer was needed because women can share their thoughts and feelings, find out more information and network,” says Dr. Nader Husseinzadeh, gynecological cancer specialist at University of Cincinnati Medical Center.
Mrs. Lamb turned to the Wellness Community, an organization that provides free services and support to people with cancer, after she was diagnosed. She was looking for help, moral support and confidence in dealing with the disease and its treatments.
Unfortunately, she had been misdiagnosed over several months of symptoms and doctor visits. She was told that her back pain, diarrhea, cramps, indigestion and loss of appetite were probably related to premenstrual problems, or stress, or a poor diet.
“But the time I realized I was in trouble, I felt the mass in my abdomen myself,” she says. “I stretched out on the bed that May and felt a bulge.”
Doctors removed three tumors — the respective sizes of a grapefruit, an apple and a golf ball. As part of her cancer treatment, she underwent six months of chemotherapy and 26 biopsies.
“Pain is a signal,” says the part-time nurse at Children's Hospital Medical Center and mother of two. “I think that as women, we are taught that any abdominal pain is related to our periods, or PMS, or because we're stressed or not eating right. But the message we need to get out there is that when your body tells you something, listen to it. Follow your instincts and really, really know your body.”
Symptoms not obvious
Unfortunately, symptoms of ovarian cancer often don't become apparent until the cancer is well established and fairly advanced.
But common symptoms include:
• Pain, bloating or discomfort in the abdomen or pelvis.
• Persistent but vague stomach upset — gas, nausea, indigestion.
• Unexplained changes in bowel habits or the need to urinate frequently in the absence of an infection.
• Unexplained weight gain (especially in the abdomen area) or weight loss.
• Pain during sexual intercourse.
• Fatigue.
Ovarian cancer is not detected by an annual Pap smear, but it can be diagnosed by a rectal exam, ultrasound, biopsies, or X-ray and with the help of CA-125 blood test.
Mrs. Lamb hopes the initial interest in an ovarian support group will grow, with the possibility of an ongoing support group, health fairs, printed materials and a walk-a-thon. She hopes to create a level of awareness and interest around ovarian cancer that rivals interest around breast cancer during October, which is National Breast Cancer Awareness Month.
“It's all women's cancer,” she says. “We're not saying one is more important than the other, but the need for awareness is just as important.”
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