Community Comment : ‘When the Groups Started, It Was Like Being Saved’

When I found out I had breast cancer in the summer of 1991 and I needed chemotherapy, it threw me. I never believed in self-help groups. Even when I was working for the Women and AIDS Risk Network, I wouldn’t participate in their sessions. I’d just sit there typing.

But this cancer was very devastating for me. I knew I wasn’t the only one going through this. I needed to talk to somebody else who was experiencing this. I asked Dr. Oscar Streeter, a radiology oncologist at County-USC, if there were any support groups for African American women. He said, “No.” I was in a state of fear. I thought I was going to die. I didn’t know you could survive breast cancer.

Finally, Dr. Streeter introduced me to some people working for the National Black Leadership Initiative on Cancer. By that time, I was really angry. The local support groups available to me were on Wilshire Boulevard or in Santa Monica. My car had died, I’m on disability, my income was cut by two-thirds and it was a three-hour bus ride to the nearest support group. I’m used to riding the buses but what about women making minimum wage who have children and just can’t miss work?

The NBLIC gave me emotional support as well as the support to develop the Women of Color Breast Cancer Survivors Project. During this, I had a spiritual experience. I became aware of all the women who died behind me with no one to talk to. I was determined to start this group.

No one was talking about breast cancer because there’s a taboo in the African American community. Everyone’s very hush-hush. We just don’t talk about things like that. People used to believe that you could catch it, that if the doctor cut on you, it would spread.

Every week for six months my friend and support group vice president, Beverly Rhine, and I would put announcements in the paper and go on the radio but no one was showing up. There was one component we forgot. We live in Los Angeles and in Los Angeles women are not going to come out at night. We decided to have a Saturday morning session and that’s when things started changing.

Now, we have two groups. One meets the second Saturday of every month at Daniel Freeman Hospital. The other is in Pomona and that meets the third Saturday of the month. We have 150 breast cancer survivors in our database and an average of 25 to 40 women show up for the support groups.

When these groups started going, it was unbelievable. It was like being found, being saved. Women were telling us they didn’t know they could survive, that their families didn’t understand.

One woman was crying when she came to us. She said she didn’t think there was anything for African American women. She had gone to a support group in Santa Monica, and here she is telling these women about her experience and they couldn’t relate. They’re muckety-mucks and she was a poor woman. And then one woman has the audacity, at the end of the session, to ask this woman who had just poured out her life story to clean her house!

Now we have a grass-roots organization that is ultimately going to spread across the country. Women are calling us. We have no administrative funds. We’re still doing this by hook or by crook. We now are in partnership with Daniel Freeman Hospital in Inglewood and they provide us with a support group facility.

African American women definitely are not getting the same quality of medicine as other women. That is a fact. You go to the doctor with a lump and he says, “We’ll watch it.” What do you mean, “We’ll watch it?” We’re telling women, “Say ‘Goodby, my brother’ and find another doctor.” He’ll be gone off making his money and you’ll be dead with children who have to go to foster homes because the doctor said, “We’ll watch it.”

We’re telling women that a mammogram isn’t good enough. You have to follow up. But there are so many problems. What do you do if you’re a woman with no health insurance? They think, “Maybe it will go away if I just forget about it.” The biggest problem is fear.

We’re always looking for people to do volunteer work. We also need a van to pick up women who have just had surgery and need a ride to our support groups.

I’ve had some real financial scares. I am just now getting my rent caught up. At one point, I was three months behind because my disability checks were coming late. I’m not a martyr but the quality of my life is greater now than it has ever been. A million dollars would make my life more comfortable but, because of this project, my life could not be any richer.

To contact the Women of Color Breast Cancer Survivors Project, call (310) 216-3200.