More ovarian cancer patients surviving past 5 years

A sense of celebration filled the banquet room at the Artichoke Café last month as about two dozen women gathered with their loved ones and medical providers.

They had survived at least one for as long as 25 years an illness whose diagnosis often is seen as a death sentence: ovarian cancer.

Laura Glicken had been getting in condition to go trekking in the Himalayas when she was diagnosed. Two years later, the Santa Fe woman and her husband went on that trip and since then have gone trekking in the Andes and rafting in the Grand Canyon.

Connie Souza of Albuquerque was inspired by her bout with ovarian cancer to become active in a support group for others grappling with the disease, lending both hope and caring to their struggle.

Mary Lou Christophersen decided, after surviving ovarian cancer, that she wasn't really happy with what she was doing. Her husband felt the same, so they started their own stained glass business in Albuquerque.

Glicken is an eight-year survivor, getting the cancer when she was 53. Souza was diagnosed in 1996 at age 61 and suffered a recurrence in 1998. Christophersen has seen five years pass since she was diagnosed at age 48.

Traditionally, people hit with ovarian cancer heard some chilling statistics: Only 25 percent of them would be alive in two years; only 15 percent would survive five years.

Now, the American Cancer Society predicts that half of women diagnosed with the cancer will make it past the five-year mark.

Dr. Nick Ritcher, a gynecologic oncologist in Albuquerque, said that number is pretty optimistic, and probably measures improvements in treatment that keep the cancer in check for a longer period. "What we've done is made people live longer with the disease," he said.

But the cure rates ridding people of ovarian cancer for good haven't changed much in the 30 years he has been practicing, he said. The problem has been and remains that the cancer often isn't found until it already has spread.

Again, the American Cancer Society notes that the five-year survival rate is 90 percent to 95 percent if the cancer has not spread outside the ovary. But only 29 percent of the cancers are found at that early stage.

About 85 percent of ovarian cancers are the type that start on the outer covering of the ovary, Ritcher said. Those cancerous cells can easily slough off and seed new cancer sites throughout the abdomen before any symptoms arise to alert anyone to a problem, he said.

Even once symptoms arise, they are so general that women find themselves struggling through a series of diagnoses before doctors hit on the right one.

Souza said she had gastrointestinal symptoms that sent doctors looking for problems in her digestive tract. It was only when pain so severe she couldn't walk sent her to the hospital that doctors finally discovered the problem.

Christophersen said her diagnosis in March 1999 came nine months after she first told her doctor she had a pain in her lower right side and couldn't walk without having to sit down and rest frequently.

"I saw five different doctors," she said, adding that none could find anything wrong.

On Christmas Day 1998, a searing pain sent her to the emergency room at the same time guests were coming up her driveway for dinner, she said. Doctors removed her appendix, gave her antibiotics for diverticulitis but, in retrospect, it turned out her ovary had ruptured and sent pus throughout her abdomen.

The same thing happened the next March. One surgeon was called in to check her colon for diverticulitis and, when he couldn't find anything, sent in another surgeon who ended up doing a hysterectomy, she said. Only when tissues were checked from that operation was the ovarian cancer found, she said.

Glicken said she was doing a lot of hiking to prepare for her trek when she started feeling vague abdominal symptoms "sensations I used to associate with a difficult ovulation," she said.

Practitioners gave her a number of opinions on what it might be, but then a friend, who also is a nurse-practitioner, did a pelvic exam and detected a mass on her ovary. An ultrasound confirmed something was there, and she went for surgery to remove what she thought was a cyst.

"When I came to and opened my eyes, I looked at my husband, daughter, friend and said, 'Oh, my God.' '' Their expressions were enough, she said, to tell her it wasn't a cyst, but cancer.

Then came the treatments: Surgery to remove affected tissue. Chemotherapy, and sometimes radiation, to try to kill any remaining cancer cells.

Just as difficult was the effort to cope with an often-deadly disease.

"The initial feeling is an incredible vulnerability if this can happen to me, what else can happen? It was a feeling like I had no skin," Glicken said.

"At first, I didn't even want to go out. I was afraid of seeing people," she said. "If I saw someone who knew, I would cry. If it was someone who didn't know, I would need to tell ... and I couldn't do that in a public place."

Souza said she got educational literature that showed her chances of surviving for five years were 15 percent. Depressed, she went to a psychologist, who told her to read books on death and dying.

"I never went back to him," she said. "That is not what you want to be reading." Her focus was on fighting the disease, not giving up, Souza said.

"You can't take someone's hope away," Christophersen said.

All the women said they had good support from family and friends, but added that some women are not as lucky. "I'm just amazed by the number of single women, single moms who go through this with 8- and 12-year-old children," Christophersen said.

"You know, it's a sad thing. We need something for these people," Souza said. Women who can't work through chemotherapy may end up losing their health insurance if they lose their job. They may get disability benefits, but they get so little that some end up living with friends or family members, Souza said.

That struggle, she said, is as bad as the disease itself.

And even someone with friends who care can find herself sometimes dealing with less-than-helpful reactions. Glicken said some people told her horror stories of others' experience with cancer, while others had theories about how people cause their own disease. "It would knock you out, the things some people told me," she said.

One person sent her a copy of Gilda Radner's book but that comedian died of the disease, Glicken pointed out. "I was 53, 54. I was not ready to die," she said.

A psychotherapist, Glicken offered her own advice for how people can help a friend diagnosed with cancer. "Stay in contact," she said. "They should not try and cheer you up, but abide with you in whatever your feelings are." Friends should just listen and let you talk, expressing whatever you're feeling at the time, she said.

"People got scared and ran away because they couldn't fix it," she said. "It's lonely going through this stuff. Just sit and hold their hand. Some friends were so scared I was going to die that they didn't come and see me."

Christophersen, who co-facilitates an ovarian cancer support group with Souza, had some other advice for people diagnosed with cancer or puzzled by symptoms. "Be your own best advocate. Believe in yourself. Reach out for support," she said.

Noting the difficulty in diagnosing the cancer, she added, "I think women have to demand more. If you know something is wrong, keep at it."

Learn more

Women interested in learning more about the Ovarian Open Arms support group can call Connie Souza at 296-0179.

Symptoms

Symptoms of ovarian cancer include:

Back pain.

Fatigue.

Bloating.

Constipation.

Abdominal pain.

Urinary urgency.

In more advanced stages of the disease, a woman may experience:

Prolonged swelling of the abdomen.

Abdominal pain and cramping.

A feeling of pelvic pressure.

Unusual vaginal bleeding.

Leg pain.

Source: American Cancer Society

Copyright 2004 Albuquerque Journal