Cancer support

Angela Soo

Monday, March 12, 2001 | 11:59 a.m.

FORCE

The Facing Our Risk for Cancer Empowered website can be found at facingourrisk. org, or e-mail info@facingourrisk.org

Some people use the Internet for finding soul mates. Some use it for shopping. Then there are the women who use it for emotional support in dealing with their risk of inheriting cancer.

Hundreds of women who are at a higher than normal risk of hereditary breast and ovarian cancer meet online every night to share their personal stories on a website called Facing Our Risk of Cancer Empowered. Many of these women have formed close friendships through their online correspondences.

Several of them met in person for the first time at the Race for the Cure in Henderson on Saturday, which drew an estimated 12,000 participants and raised $450,000 for the Susan G. Komen Breast Cancer Foundation.

"I'm meeting Terri for the first time after e-mailing her for two and a half years," said Joanne of Edmonton, Canada, who, like most of the reunion participants, asked that her full name not be used. "I was going through genetic testing and needed assurance. Terri already went through it and was always willing to help."

"Before I found out about FORCE, I felt so alone, like no one is going through the same thing," said Terri, of Los Angeles, who had both ovaries removed. "It's empowering when you find others who share your experiences. You feel normal."

Facing Our Risk of Cancer Empowered is an Internet-based nonprofit group that's dedicated to informing women who are at risk of getting certain hereditary cancers at a younger than usual age through flawed genes and provides resources, advice and support for its users.

FORCE started two years ago after Sue Friedman, president and founder of FORCE, noticed the limited amount of resources available to such women.

Friedman said women who were at risk of hereditary cancers, but not diagnosed, had nowhere to turn. She didn't want other women to experience the same isolation she went through.

"I went to a support group for young cancer survivors. Most of the women had chemotherapy and radiation. I only had a mastectomy. I was told I didn't even know what pain and suffering was, that I hadn't suffered enough for their support," Friedman said.

Friedman, 37, was initially diagnosed with pre-cancer -- the earliest possible detection -- at 33. Eight months after her mastectomy, she had a recurrence in her lymph nodes.

"It didn't make any sense. I exercised and ate right. The only family history I had was my grandmother dying of kidney cancer, which I guess could have been mistaken for ovarian cancer," Friedman said.

Having a family history of the disease significantly increases a woman's chance of getting cancer by 1.5 to 3 times. Other factors include a woman having her first child after 30, starting her period before the age of 12 and starting menopause after 55.

Friedman focused on the family history.

"I read an article about hereditary breast and ovarian cancer and a test to determine if my cancer could have been caused by hereditary factors," Friedman said.

She tested positive for BRCA 2, a genetic flaw that increased her chance of getting cancer in her other breast by 85 percent. The genetic alteration also increased her chances for ovarian cancer up to 25 percent

"That's when I decided to have my 'healthy' breast and ovaries removed," Friedman said. "The decision isn't right for everyone, but at the time, I felt it was my best option."

Many women who visit the FORCE website share similar stories of such surgeries, where healthy organs are removed in order to reduce the risks of getting cancer.

"Some thought I was crazy to remove my breast after I found out I was BRCA 1 positive," Susan of Chicago said. "They thought I was overreacting. I felt very alone until my genetic counselor told me about FORCE."

Without meeting other FORCE members online, Susan said, "I don't know if I would have the courage to go through with my mastectomy. I found real comfort there. I'm online every day now to give and get emotional support."

Those with hereditary cancer face issues "separate and apart from other cancer patients," Friedman said. Cancer patients often have no choice but to remove the unhealthy organ, whereas women at FORCE consider removing healthy organs before it reaches that stage.

"I wish I knew about FORCE during the time I was going through my surgeries," said Ami of Washington, D.C., who had both ovaries removed and had a bilateral mastectomy. "Not because I was sick, but to have support for taking control of my destiny."

Breast cancer afflicts 182,800 women per year, which averages one out of every eight females, according to the Susan G. Komen Breast Cancer Foundation. About 5 percent to 10 percent of those cases are caused by genetic mutations. The death rate is 40,800 women per year.

Friedman urges women to see a genetic counselor if they think they are at risk. "There's a lot of misinformation out there, and people need to see specially trained professionals to help assess hereditary risks," she said.

Certain populations, such as Eastern European people of Jewish descent, are also more inclined to carry the gene mutations, Friedman said. However, "any group can carry the genetic flaw."

FORCE is the only website specifically targeted towards women with hereditary risk of breast and ovarian cancer, Friedman said. The number of FORCE participants continues to grow, providing support to a population of at-risk women who have limited resources devoted to their cause.

"It's like a cyclical process," said Susan, "We were all scared at one point in time. But, now we can use our experiences to help others who are new to FORCE."