Features
The Big C
The Big C
Three Lesbians Talk About Breast Cancer
Cancer Survivor Carol Altobelli
by Jenn Baudreau
Lesbians
often hear that we are at a higher risk for breast cancer than all women.
The problem isn't being a lesbian; it's the actual and perceived discrimination
by hospitals, doctors, and other health care agencies. According to The
Mautner Project, a national lesbian health organization based in Washington,
DC, "Lesbians are likely to receive substandard care, or remain silent
about important health issues they fear may lead to stigmatization."
Early detection increases the chance of surviving breast cancer, but the
Mautner Project cites that 50 percent of lesbians studied did not receive
a clinical breast exam in the previous year, whereas the national average
that includes heterosexual women is 25 percent.
There are other risk factors,
but they apply as much to all women as to lesbians: increasing age, family
history of breast cancer, previous abnormal biopsies, radiation exposure,
early menstruation/late menopause, hormone replacement therapy for more
than 5 years, not having biological children, or having the first child
after age 30, lack of physical activity, being overweight, diet low in
fruits and vegetables and high in saturated fats, and high alcohol consumption.
The factors are listed in the brochure "Busting Out: Breast Health
for Lesbian & Bisexual Women," published by the Sherbourne Health
Center in Toronto, Canada.
So how do lesbians with breast cancer
in Vermont fit into these realities? Of course, every woman's experience
with cancer is vastly different, but this article examines the cancer
experiences of three Vermont lesbians to learn how cancer changed their
lives, and how being a lesbian affected their experience.
Community Support: Roz
In 1994 Roz Grossman was washing herself
when she discovered a lump in her right breast. Her family had no history
of breast cancer and she didn't have any other risk factors. She was treated
with a lumpectomy, radiation, and a drug called tamoxifen. Then, three
years ago, she discovered she had lymphoma. She was out of work for six
months getting chemotherapy, and is now getting a new type of therapy
called rituxin, which she describes as "state of the art."
Over the course of these treatments
and extensive hospital and doctor visits, Grossman and her partner Diana
Carminatti were fortunate to have a mostly positive experience as a lesbian
couple within the health care system.
"Except for the very first doctor
way back when I was first diagnosed with breast cancer who didn't treat
me very well," Grossman says, "I've never had any problems or
discrimination being a lesbian. All subsequent doctors have been very
open and good about talking to both of us and including Diana."
When asked how being a lesbian affected
her cancer experience, Grossman's first reaction was to say that it didn't
have much of an effect at all. She spoke instead of the profound ways
that cancer affected her as a woman that were not lesbian-specific.
"It made me wake up and ask deep
questions," she says, "What do I believe in? What do I want
to do with my life? Where do I want to live? And then I made some changes."
Then she thought of another important way that being a lesbian had a profound
impact on her experience.
"At first I thought that being
a lesbian hasn't affected me, but then I thought that's not necessarily
true, because the support network I have is a lesbian community. That
doesn't mean that people at work and my family haven't been extremely
supportive – they have – but the core community who has stood
by me has been a lesbian community."
Outrageous Doctors: Patricia
Patricia Fontaine feels differently
about the medical professionals she dealt with. Fontaine has had a lot
of cancer experience over the years, first diagnosed with breast cancer
in her left breast in 1995, with several recurrences in her lymph nodes,
salivary glands, and then her right breast. At first she tried to avoid
toxic treatments and she had a mastectomy of her left breast. When the
cancer returned in her lymph nodes three years later, she "made peace"
with treatment and underwent six months of chemotherapy and then six weeks
of radiation. Nonetheless, the cancer returned in her salivary glands,
which she had surgery to remove. That summer a routine mammogram discovered
cancer in her right breast.
At this time she became "exhausted
of worrying" and opted for the mastectomy. Unlike Grossman, however,
she became frustrated with what she describes as "outrageous"
behavior from the doctors she saw.
"When I began to make the rounds
of surgeons – I wanted a woman and I also wanted the best –
every single surgeon without exception assumed that I was heterosexual
and assumed that I'd want to do breast preservation, assumed that idea
of femininity."
Although Fontaine loved her breasts, she
doesn't wear any substitutes since her mastectomies. "I get called
'sir,' but I got that anyway. I have a birthmark on my face, so I'm no
stranger to staring." The experience has sent Fontaine on a "mission
to question beauty."
Fontaine's community of people who
helped her through her cancer experience was not based in the lesbian
community. She was single when she was first diagnosed and it was her
"great support network of sisters and friends" who played a
large role in helping her and by taking her to chemotherapy every three
weeks and marking the occasion by doing something crazy like dressing
up or reading something funny.
"I think there's an illusion
that it's easier for lesbians with breast cancer," she says of the
idea that being a lesbian means you automatically have a big community,
"but I don't think that's necessarily true."
Although being a lesbian undoubtedly
has affected Fontaine's experience, she, like Grossman, had so much more
to say about other areas of her life that were affected by cancer, and
the changes she's been through and made. "When I was first diagnosed
I was hurt and angry, pissed off." She was at a tough time in her
life already, dealing with a recent break-up and feeling isolated. "Someone
would say, 'what are the gifts of cancer?' and I'd just want to slap them,"
she says.
By the time of her second round of
breast cancer, she had made a sort of peace with herself. She wrote a
book of poems about having cancer, through which she realized metaphors
that help her understand and process her experience. "I will not
be at war with my body," she says, dismissing the metaphor of battle.
For Fontaine, the idea of "meeting" cancer works much better.
Strong Partner: Carol
Carol Altobelli brought up other ways that
being a lesbian affected her cancer experience. Unlike either Grossman
or Fontaine, Altobelli has had no reoccurrences with her breast cancer,
which was diagnosed in 1997. Her cancer was stage two, which meant that
she had no choice as to whether she wanted to try to treat it with non-toxic
methods: she had to get twelve months of chemotherapy, then radiation,
as well as a mastectomy. For her, the treatment was disabling while it
lasted.
In addition to her partner, whom Altobelli
describes as "my strength" and who "took on everything"
by being the breadwinner, the cook, doing the laundry, and doing the shopping,
Altobelli also turned to contacts in the lesbian community who had cancer
as well. She knew many of these women, including Grossman, in the community
but had never been close before the cancer. She ended up finding a sort
of informal support group with three other lesbians in the community with
cancer, who provided support and helped coordinate meals for her and her
partner.
Altobelli also found that being a
lesbian made it easier to deal with having a mastectomy. "It was
not at all an issue for me," she says. She believes that having a
woman partner made it easier for her partner to understand what she was
going through. "She was extremely present and supportive," Altobelli
says of her partner. "I'm not sure that heterosexual women get that
same type of support from their husbands."
While every woman's experience with
cancer is always unique, it does seem that some lesbians in Vermont have
better resources: more open doctors and a strong lesbian community. There's
always room for improvement – whether it's dispelling stereotypes
about femininity, creating stronger resources for women who may not be
as connected to a lesbian community, or educating health care professionals
about the specific needs of the queer community – but Grossman,
for one, is thankful to be in Vermont. "I'm very glad I'm in Vermont,"
she says, "We have a small community and I think we have a good cancer
center with doctors who are very experienced, and so we’re lucky
about that."