Women with advanced breast cancers feel left out, forgotten
Although Kelly Lange has had breast cancer for 16 years, she feels unwelcome at most support groups.
Doug Kapustin, for USA TODAY
Kelley Lange listens to a member of her informal support group called "Metavivor" at a Severna Park, Maryland Starbucks.
Like many women with an advanced form of the disease, Lange says she feels alienated from the larger breast cancer community, and out-of-place at the countless events held each October for Breast Cancer Awareness Month. Most focus on "the cure," she says, with brave women describing how they beat a fearsome disease.
Lange doesn't expect to beat breast cancer. There is no cure for breast cancer that has metastasized, or spread to other organs; most patients survive just two to three years.
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"Metastatic breast cancer patients represent the early-stage breast cancer survivor's biggest fear," says Lange, 48, of Annapolis, Md., whose cancer relapsed five years ago. She says she was recently asked to tell her story to a breast cancer group. "When I got to the part about metastasis, people started squirming."
Some groups ask women not to reveal that their disease has spread, says Dian "C.J." Corneliussen-James, 60, who has lived five years with metastatic disease. "That means the people with the worst situation have no support."
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At other events, metastatic patients "hear about women who are surviving and celebrating, but they are women who every day have to summon the strength to overcome fatigue and all the other side-effects," says Karen Neyer, an oncology social worker with the Cancer Support Community. "They're living with cancer and going on with their lives every day."
Much of the recent discussion of "pink fatigue," including the backlash against what's become known as "Pinktober" and "pinkwashing," has come from women with metastatic disease. Most October breast cancer events — from fundraisers to walks, runs and relays — are "all full of hope," says Sally Drees, 42, of Des Moines, Iowa.
"I don't want to be a big 'Debbie Downer,' but I don't have a ton of hope," says Drees, whose breast cancer has spread to her ovaries.
"I wear the pink ribbon when asked," says Susan Niebur, 38, a mother of two young children who receives daily radiation therapy to treat the spread of cancer to her bones, as well as regular doses of chemo. "But it doesn't fit."
Fran Visco, president of the National Breast Cancer Coalition, notes that the USA hasn't made enough progress in saving lives from breast cancer.
"In October, and year 'round, we paint breast cancer as very pink and pretty, and we don't talk about the fact that we haven't made much progress against Stage 4 disease," she says. "The mortality rate has gone down, but it's been nowhere near commensurate with the money and attention heaped on the disease."
Neyer says these women need their own forum. "People think that when you have cancer, you're either cured or you die," Neyer says. "Women with metastatic breast cancer are living with ongoing treatment that will last the rest of their lives, but they're not necessarily dying" immediately.
Katherine O'Brien of Chicago says few people understand what it's like to live with advanced breast cancer. "People ask, 'When do you stop treatment?'" says O'Brien, 45, who writes a blog, ihatebreastcancer. "We don't; when we stop treatment, we're dead."
Unlike women with early-stage cancer, those with metastases must cope not only with the rigors of treatment, but the symptoms of advanced disease. "I go to radiation every day just to be able to sit up," says Niebur, an astrophysicist who lives near Washington, D.C., and blogs at Toddler Planet.
Yet few support groups exist for metastatic patients, even though more than 40,000 Americans a year die of the disease, Corneliussen-James says.
Drees says she's found support online. Corneliussen-James launched her own group, Metavivor, in Annapolis. It has even created its own ribbon, with blue, teal and pink stripes. The group helps raise money for research into metastasis, which Corneliussen-James says is critically underfunded.
Lange says there's a growing awareness that women with metastatic disease have been left out; she praises group such as the American Cancer Society for working to include them.
A recent "Relay for Life" in Maryland, she says, had a sign welcoming both "survivors and metavivors," she says. Another group, Living Beyond Breast Cancer, holds an annual conference on metastatic disease, and includes workshops on advanced cancer at all of its meetings, particularly a conference for young patients. The Cancer Support Community in Philadelphia offers a monthly group for metastatic patients. The National Breast Cancer Coalition includes advanced disease in its goals.
Metastatic groups aren't necessarily depressing, Corneliussen-James says.
"We don't meet at hospitals. We meet at coffee shops. We go antiquing. If you come to our group, you can't say, 'Oh my God, my life is so horrible. I have Stage 4 disease.' Because everyone will look at you and say, 'And you think we don't?' There is no room for pity. There is always someone worse off than you."
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