When Nan Van Den Bergh was diagnosed with stage two breast cancer in 2003, she had no one to turn to, other than her close friends and former partners.
She hadn’t lived in Miami for long, her family lived in upstate New York and her nurses and surgeon made her feel uncomfortable about acknowledging she was a lesbian.
“Many times in my life when I disclosed my lesbian identity, people’s facial expressions changed and then my feelings get hurt and I get scared,” she said. “I was not about to come out in a group of very straight women and talk about my experience, not having my support system there.”
After realizing that others must have had similar experiences, she created an organization to help the lesbian, bisexual and transgender (LBT) community.
The now 66-year-old clinical professor in the School of Social Work at Florida International University founded ARROW — Area Resource and Referral Organization for Women — to provide education, support services and resources for women in the LBT community.
Van Den Bergh is one of several breast cancer survivors in South Florida who have started organizations to help others navigate breast cancer, which affects one in eight U.S. women, according to the American Cancer Society. (About 232,340 new cases of invasive breast cancer will be diagnosed in 2013, the society says.)
One group — The Beautiful Gate Cancer Support & Resource Center — provides support to black women affected by cancer. Another — The Women’s Breast Health Initiative Florida Affiliate — educates underserved women, particularly among the working class.
All three groups have received grants from the Susan G. Komen Foundation’s Miami/Fort Lauderdale affiliate, which will host its 18th annual Miami/Fort Lauderdale 5K race at Bayfront Park on Saturday. This year, the goal is to raise $1 million to fund research and local groups.
Breaking the silence
Pamela Burnett, who was diagnosed with Stage Zero breast cancer in 2002 (when cancer cells are still within the duct and haven’t spread), says that when she began helping others, she began to heal.
Burnett, a quit-smoking cessation counselor at the University of Miami, could not find people to talk to about her diagnosis, and quickly became depressed and scared. At one point, she was taking 16 pills a day.
“When I was diagnosed, I didn’t know anything about cancer,” Burnett said. “The family didn’t talk about cancer. They just came from that era. Everyone was silent. I allowed the doctors to make every decision for me. I always said, ‘OK. Oh, but I know better now.’ ”
In 2006, Burnett decided it was time to break the silence, and founded Beautiful Gate.
“A voice inside of me was saying, ‘Pam, you do it,’ ” said Burnett, now 52.
Two breast cancer support groups are hosted every month — one in Miami-Dade County every first Thursday of the month and one in Hallandale Beach every second Thursday of the month — where doctors, plastic surgeons and pathologists educate women about breast cancer.
The organization also provides women with transportation, financial assistance, art therapy and stress management sessions and holds workshops in public schools in underserved areas throughout the year.
“We teach these women to be proactive and to ask around before making a decision,” she said. “Women come to me and they think they’re going to die and I tell them we are, but not today.”
To date, the group has helped more than 1,000 women.
“Folks always think the poor always have their hands out, but we don’t want a handout,” she said. “We want a helping hand. We want the same thing that has been afforded to other people.”
Burnett says all the medicine in the world could not do what helping others did for her. “Anytime I can help the community, I will do it,” she said.
Andrea Ivory, founder and executive director of The Women’s Breast Health Initiative Florida Affiliate, says she is the product of the benefit of early detection.
Ivory, 54, was diagnosed with Stage Zero breast cancer in 2004. Because she had fibrous, lumpy and dense breasts — which put her at a higher risk factor for recurring breast cancer — she decided to have a bilateral mastectomy and breast reconstruction.
“The beauty of early detection is choice and that was my choice,” she said. “I was able to take charge of my own destiny and my life.’’
Although Ivory had health insurance and was educated about breast cancer, she noticed many other women in the hospital did not have the same opportunity.
In 2005, she founded The Women’s Breast Health Initiative. Her organization’s mission: educate underserved women about breast health and provide them resources to help them defeat the disease.
“I want to ensure that people are treated with respect and love and have the same opportunities that I had,” she said.
The organization, which recruits local college students and provides them with service learning hours, goes door to door five months of the year — February, March, April, September and October — in Miami-Dade, Broward and Palm Beach counties.
On Saturdays, about 60 volunteers knock on 476 doors and in every household where a women resides, the woman receives a package that includes early detection guidelines and a list of places that offer low or no- cost mammograms.
Additionally, volunteers who identify a woman over 40 make appointments on the spot for them to receive a mammogram. During the last Saturday of every month, the organization brings a mobile mammography van and clinicians into various neighborhoods, providing women with fruits, vegetables, and a healthy recipe cookbook.
“We do everything to make sure that all women, regardless of their inability to pay, have a right to benefit from early detection,” Ivory said.
Every year the organization visits 10,000 households and serves 500 women. The organization targets neighborhoods with a high late-stage breast cancer rate, focusing on neighborhoods with a high rate of poverty.
“We were not put on this earth for self-indulgence,” Ivory said. “We were put on this earth to do a service for others. You get more from that than you can ever give.”
Since founding ARROW in 2009, Van Den Bergh estimates more than 1,000 lesbian, bisexual and transgender women have received breast health education and more than 250 healthcare providers have been trained in caring for LBT patients. ARROW also informs women where they can be screened, if they have no insurance.
“We are concerned about women who do not have the kinds of economic resources or educational resources to really be able to take advantage of the increasing number of breast cancer prevention resources so we are bringing it to them,” she said. “We want to go to the hospitals and the clinics and teach medical students about this new generation. We come to them and it doesn’t cost them anything at all.”
ARROW is creating a buddy program that will allow newly diagnosed LBT women with any type of cancer to connect with LBT cancer survivors.
“I would have been so grateful to have had another lesbian woman to talk with about the experience I was going through because I wouldn’t have to edit,” Van Den Bergh said. “When I am out and about, I have to think about what to say and what is going to happen if I come out and I don’t want any woman to have to go through that.”
Van Den Bergh, Burnett and Ivory says it’s critical for breast cancer survivors to share their experiences with others, to help them — and help heal themselves.
“When there is a disparity and it isn’t right and something needs to be changed, you take action,” Van Den Bergh said. “If you are a cancer survivor, you have something to give and you have something to share. So give back. It’s all about giving back.”