Sparkle of Hope
Cancer Support Groups
Master of Ceremonies Rita Britt (right) with Lynn Maurer
MADISON - A survey of women with gyncologic cancers found that they prefer the term, "female pelvic cancers" over the medical term, gyn cancers.
Whether it is gyn cancers or female pelvic cancers, the important thing, according to Ellen Hartenbach, MD, UW Health gynecologist, is that people talk about it.
Dr. Hartenbach spoke to more than 200 individuals at the recent Sparkle of Hope gynecologic cancer fundraiser for the University of Wisconsin Carbone Cancer Center. The event helped to raise funds for research, as well as bring a greater awareness to gynecologic cancer and the more than 80 million women affected by the disease each year.
Rita Britt, a two-time cancer survivor and master of ceremonies for the evening, shared her, "Two Foot Principle" for spreading the word about gynecologic cancers - "If you come within two feet of me, I'm going to talk to you about this [disease]."
Ovarian and uterine cancers are among the top 10 cancers affecting women’s health. Research is critical to making advances in understanding and treating the disease. Joe Connor, MD, gynecologic oncologist with the UW Carbone Cancer Center explained some of the progress being made in ovarian cancer research.
More than 25 years ago, a blood test was developed that looked at CA-125 molecules present in ovarian cancer patients. It is commonly used to screen and monitor the progress of ovarian cancer in the body. According to Dr. Connor, "Physicians used the test without really knowing what the CA-125 molecule did."
About 10 years ago, researchers discovered that CA-125 was actually a little piece of a much larger molecule. Now research is focused on how it works in the body.
Dr. Connor explained that thanks to numerous ovarian cancer patients who donated blood and tissue, researchers are able to examine CA-125 and learn more about how it works within the body. They are working to develop an antibody therapy that will target CA-125 molecules only when they are stuck on ovarian cancer cells.
"Measuring CA-125 in the blood stream is just the tip of the iceberg," said Dr. Connor.
While the future of gynecologic cancer lies in research, the reality of the disease is reflected in the experience of women whose lives are affected by it.
Laura Clark Hansen, an ovarian cancer survivor, offered the patient's perspective on living with the disease.
Laura Clark Hansen, pictured left with her niece Libby Riddle Reeder, shared her experiences as an ovarian cancer survivor
She was there to, "put a humanizing face on what can be a hush-hush illness," because, she joked, "it's about our hoo-hoo's, our va-ja-ja's."
Because the symptoms of ovarian cancer are so subtle, it is often called, "the disease that whispers." Hansen said she likes to call it the, "chameleon cancer" because, like the lizard, "it hides right in plain sight."
Like many women, Hansen ignored early symptoms because she dismissed them as being a part of "the change," or menopause. She explained that the symptoms of ovarian cancer include:
- Back pain
- Urinary tract infection
- Abdominal distention
- Dysfunctional uterine bleeding
- Shortness of breath
- Pressure in the pelvic region
As a trained actress and educator, it was when she began running out of breath just speaking that she finally grew concerned. Her doctor took her symptoms seriously and ran tests. While her CA-125 test results were in the normal range, surgery revealed the growths on her ovaries were cancerous.
Luckily, Hansen’s cancer was caught in the early stage and after "text book treatment," which included six rounds of chemotherapy, she is "doing great." Or, as ovarian cancer survivors refer to it, she is, "dancing with N.E.D. - no evidence of disease." Hansen has a 50/50 chance the disease will return.
Upon being diagnosed, Hansen received numerous inquiries, particularly from her sisters, wondering what people could do to help.
"Isn't it hard," she observed, "to stand on the sidelines and just watch?"
When she lost her hair to treatments, she told family and friends that she needed hats. They flowed in from everywhere. According to the survivors Hansen informally polled, that's one of the many ways you know you're a survivor, "when you suddenly owns dozens of hats."
It can be difficult to know exactly what to do to help a friend and loved one with cancer. With the help of members of A View from Beyond, the UW Carbone Cancer Center gynecologic cancer support group, Hansen compiled a list of what patients found helpful and not so helpful during their treatment.
She called it, "The Do's and Don'ts for Providing Support."
- Do call, write, e-mail
- Don't be hurt if we can't respond or don't. "Some days we're able to connect, some days we're just not," she said.
- Do offer distractions
- Do remain positive, honest, hopeful, humorous but, "please don't admonish us if we can't or won't share in those moods."
- Don't share horror stories of someone who has had cancer and died an agonizing death. Hansen commented, "you wouldn’t believe" the stories people feel compelled to share.
- Take care of yourself. Don't suffer on the altar of our disease.
And, she concluded, most importantly, "do send hats."
Date Published: 10/28/2009