Susan Atkins never expected her partner of nine and a half years, Marcia Gorman, to be diagnosed with breast cancer. At age 52, Marcia was a vibrant woman in excellent physical condition. She exercised regularly, didn’t smoke, didn’t drink excessively and consistently received positive evaluations during physical exams. However, as is usually the case with women diagnosed with breast cancer, Marcia discovered a lump in one of her breasts during a routine self-examination. Doctors diagnosed the lump as a stage-one, fully curable malignancy, and treated it with a combination of surgery, chemotherapy, and radiation. The tumor, however, did not respond to treatment. “From that point on,” explains Atkins, “I watched a perfectly healthy person decline until the point where, at the last chemo visit the week before Marcia died, people were asking me if she was my mother.” In Marcia’s case, it was a mere six months from diagnosis to death.

Unfortunately, stories like Marcia’s are becoming all too common within the lesbian community, as women of all ages, races, and socio-economic backgrounds are being diagnosed with breast cancer in what seems like record numbers. Although there is still some controversy as to whether or not lesbians are more likely than heterosexual women to be diagnosed with breast cancer, the risk factors certainly run rampant within our community. As a result, medical practitioners, activists, and survivors of breast cancer are coming out in droves to discuss the realities of breast cancer and the ways in which it can be detected and managed, if not prevented.

According to a study presented at a 1998 meeting of the Gay and Lesbian Medical Association and published in the Medical Tribune, lesbian women may be at higher risk of developing breast cancer than heterosexual women. At the forefront of this issue is the fact that lesbians are often less inclined than heterosexual women to access conventional medical treatment. As San Diego internist Dr. Janette Gray explains, lower economics, fear of discrimination and past negative experiences with healthcare all contribute to an avoidance of healthcare within the lesbian community. Although Gray argues that there is no genetic difference between heterosexual and homosexual women that increases disease risk among lesbians, she stresses that the lack of screening taking place within the lesbian community increases the chances that a woman will be diagnosed in more advanced stages of cancer, when fewer treatment options can be introduced. “It’s important to encourage women not to be afraid of the system, to get more involved and do more preventative care,” explains Gray.

Another factor that may contribute to the development of breast cancer within the lesbian community is the fact that women who have children after age thirty, or never at all, are at increased risk for breast cancer. It is believed that certain hormones released during pregnancy act as a preventative force against breast cancer. Studies show that lesbians are less likely than heterosexual women to have children, and therefore may be at increased risk. It should be stressed, however, that lesbians who choose not to have children are at no greater risk than heterosexual women who also choose to refrain from bearing children. As Suzann Gage of the Lesbian Health Clinic explains, “There are statistically higher rates of cancer among women who never have children or have children at a later stage, and this is not based on sexuality. It is very important to stress that being a lesbian or being a woman who does not have children does not automatically make you a diseased person. [The risk factor] doesn’t even come close statistically to having a mother or sister with cancer.”

Family history is, naturally, a risk factor that affects both heterosexual women and lesbians. However, Dr. Anne Wallace, oncologist to many lesbian patients in San Diego, stresses the importance of looking at one’s entire family history when assessing cancer risks. “It is important to look not just at the female family history, but to look at your father’s family history as well. A history of prostate or bladder cancer, or maybe melanoma, can increase your risk. It’s really important that any woman know her entire family history in detail,” she explains.

It is also vitally important that lesbians pay attention to lifestyle choices when assessing cancer risk. Drinking excessively, smoking tobacco and taking illicit drugs can all increase a woman’s risk of developing breast cancer. As Gage explains, lesbians and feminists have been worrying about the potential for cancer within the lesbian community since the early 1970’s, a time when smoke and alcohol-filled bars were the main destinations for women in search of other women. Today, alcohol, tobacco and drugs still pose a threat to lesbians, as does the level of obesity within the community. As the Mautner Project for Lesbians with Cancer points out, a high-fat, low-fiber diet increases risk, and risk also increases with higher weight.

When Peggy Walkush of San Diego was 39, she was a lot more concerned with turning 40 and leaving her job of sixteen years than she was with her personal risk factors for breast cancer. Walkush was in what she describes as the best physical shape of her life, working out, running and doing yoga regularly. Having just had a clean physical exam in October, she was shocked when, in January, she found a “noticeable lump” in one of her breasts. After an immediate evaluation, her doctor assured her that it was probably a cyst, but proceeded with an ultrasound to be sure. After the ultrasound showed that the lump was a solid mass and not fluid-filled, Walkush’s doctor suggested a mammogram. The mammogram came back negative, but again to be on the safe side, the doctor suggested a needle biopsy. Under the assurance from her doctor that it was “probably nothing,” Walkush had the biopsy done, and put it out of her mind during the two-week waiting period for results.

“When my doctor called and said, ‘It’s carcinoma,’ I was shocked,” says Walkush. “The first thing that comes into your head is, ‘I’m going to die.’ Then you rush to the web, and you’re confronted with all these statistics about death, and you think, ‘But I’m only 40 years old, and I haven’t even started to live and do what I want to do with my life!’”

Walkush describes her first response to her diagnosis as sheer panic and denial. “The doctor said, ‘You’ll probably have to have surgery and chemo,’ and I’m thinking, ‘Chemo? Not me! That’s something other people go through.’ I felt like I was viewing my life as someone else looking in.”

It was at that point that Walkush realized that she was being confronted with too much information, and needed to enlist her partner of eight years, Jan, as well as other family members, to be her medical advisors. The first step was finding a surgeon to do a lumpectomy. Four rounds of chemotherapy and seven weeks of radiation followed. Walkush was diagnosed with cancer in February of 2003, went through surgery in March, and finished radiation just a few months ago, in late August. She describes the experience as “a long haul,” during which the chemotherapy was her least favorite part.

An energetic woman by nature, Walkush attempted to stay active even once she began her chemotherapy treatment. “After the first round of chemo, I even ran a little, and still felt pretty good,” she says. “After the second chemo, I was definitely walking and walking slower. After the third round, all physical energy went out of my life. Having my independence taken away like that, that was one of the hardest things. Having to have other people do things for me; it took a while before I was able to accept that. I felt like my energy was so much a part of my personality, and all of a sudden your personality takes on a whole new cast. I can remember lying in bed, staring out the window and thinking, ‘We take for granted that we get up every day and we can take a walk, and run. I am not going to take my body for granted as soon as I get well.’ That became my motivation. And a few weeks after chemo, I said ‘let’s get out there and walk!’”

Today Walkush is energetic and optimistic, but she does have a message for other women about the realities of breast cancer. “Do your breast self-exams, do them regularly, and get your mammogram. They have made so many advances in the treatment of breast cancer that it is to your benefit to find it early and go see a doctor, because there are so many treatment options out there. Women have to be aware, denial is not an option.”

Peggy Walkush is not alone in her battle against breast cancer in the lesbian community. Both in San Diego and nationwide, the number of organizations offering programming and resources geared specifically towards lesbians with breast cancer is increasing. A vibrant example is the Breast Cancer Support Group, designed for lesbian and bisexual women who have had or currently have breast cancer. This free group meets every second and fourth Tuesday of the month at The Center’s Health Services building (2313 El Cajon Blvd.), and welcomes women in all stages of treatment or recovery. The group was the brainchild of Lisa Rhodes who, in 2000, was sitting on the board of The Center and wished to make the group a reality. As co-founder Pierrette Van Cleve explains, the project picked up momentum in 2001, raising a great deal of money through creative fundraising efforts that included “bra parties” (at which women guessed the astrological signs of the owners of displayed bras), nights at La Jolla Playhouse, fine art auctions, and other community events. Today, the Breast Cancer Support Group provides an efficient and safe space for women to talk about all issues related to breast cancer without having to worry about additional issues of sexuality and coming out.

“I myself am tremendously committed to this,” says Van Cleve. “I come from a family of girls, and I have a daughter, and I’m a lesbian. And beyond that, I’m a compassionate human being.” Although Van Cleve is not herself a survivor of breast cancer, she feels extremely connected to the cause. “I think the awareness around breast cancer is not that high,” she explains. “I don’t think people really understand in what epidemic proportions this is affecting us. At one point, it seemed that every time I got an e-mail someone was telling me that they had breast cancer. At that point, I was going be damned if I was not going to be a warrior for women everywhere!”

In response to the tremendous amount of activism and fundraising they have done on behalf of women’s health, both Susan Atkins and Pierrette Van Cleve will be recipients of the Renee Richetts Award, named for the well-known lesbian activist. “This award is an astounding thing for me, and it’s really nice to be recognized, [but] I didn’t expect it and it’s not why I do it,” says Van Cleve. “Every time I see a friend of mine go to the Breast Cancer Support Group or I look into the face of survivor, I know that I didn’t stand back, I stepped up. [I know that] we’re not running, we’re not forgetting that we’re part of the community.”

Joining the Breast Cancer Support Group on the front lines is the Lesbian Health Clinic, now located in San Diego and West Hollywood. The Lesbian Health Clinic offers numerous health services to lesbian and bisexual women, including the CARES Program (Complimentary care, Advocacy & Action, Resources, Education, Support, Self-help & screening) for lesbians/women loving women with cancer and other life challenging illnesses. Complimentary care services include acupuncture, massage, Qigong, nutritional guidance and more. The clinic also hosts support groups for women suffering from cancer, as well as groups geared specifically towards caretakers, significant others and friends.

“Education is something we put a great deal of effort into,” explains licensed acupuncturist and nurse practitioner, Suzann Gage. “We assist women in getting as much information as possible about conventional, alternative, and complimentary treatments. Support groups are structured to provide emotional support and self-help so that women can share their feelings and experiences and benefit from what other women are doing, how they’re coping, what health care regimes they’re employing and so on.”

In order to stay at the forefront of lesbian health research, the Lesbian Health Clinic has also published the National Lesbian and Bi Women’s Health Survey, based on its findings during a 1993 study of breast cancer in lesbian and bisexual women. “No studies prove that there are higher breast cancer rates in lesbians than in other women,” Gage notes. “Our studies did find increased rates among women who drank, smoked and used drugs, so clearly there is a need in our community to address these issues and support one another in these issues.” And as Gage is quick to stress, this kind of support begins with education and action.

Survivors, activists and health care providers all agree — the way to make a difference in the fight against breast cancer is to take action, whether that means making a commitment to doing regular breast self-exams, or making a commitment to raising funds for breast cancer research.

“Be generous in supporting cancer research,” stresses Atkins. “We haven’t found the cocktail to manage breast cancer yet.”

Van Cleve supports this statement, emphasizing also that the fight against breast cancer should not be solely a women’s fight. “I wish some of the men would get behind us like we got behind them. When they asked us to call to arms we did everything we could, and now we could use a little help in return. It would be nice if we weren’t just women for women.”

On Sunday, Nov. 2, everyone in San Diego will have the opportunity to support breast cancer research by taking part in the Komen Race for the Cure. Highlights of the Balboa Park event will include a survivors ceremony, a 5K run/walk, a one-mile family walk, and an awards ceremony.

“I would like to be an example of what you can do just by wanting to do it, just by believing that giving fifty dollars to breast cancer is more important than going to Home Depot or buying a cappuccino,” says Van Cleve. “Start picking up the phone, or start filling up a cookie jar, because at the end of the day, what is going to count is what you’ve done for other people. For me, it’s worth everything.”