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Why Are 40,000 Women a Year Still Dying From Breast Cancer?

This week marks the close of the 29th annual Breast Cancer Awareness month. While everyone agrees awareness has improved, the number of women dying from breast cancer every year has not changed since the 1970s. Reno Public Radio’s Amy Westervelt investigates why.

More than 3,000 supporters donned pink tutus and feather boas for the Susan G. Komen Race for the Cure in Reno earlier this month. The annual race raises funds for local breast cancer screening services. It also helps raise awareness, according to Heather Goulding, executive director of Komen's Northern Nevada branch.

“Thirty years ago when people weren’t talking about breast cancer all the time, people weren’t saying, 'Hey, did Aunt Suzie have breast cancer? Is that what she died from?' So, do you know what your family history is? Now we know that that’s really important.”

No one disputes that awareness has increased around breast cancer, but: “We're plenty aware and the focus needs to shift," says Dr. Kelly Shanahan, who runs the Emerald Bay Center for Women’s Health in South Lake. Back in the '70s, 40,000 people a year died--men and women--from breast cancer here in the U.S. And that's true now as well.”

Shanahan was diagnosed with metastatic breast cancer in 2013. Metastasis happens when cancer cells migrate from the breast elsewhere in the body, triggering cancerous growth. It is terminal and there is no cure.

Various breast cancer nonprofits, Komen included, say that the survival rate for breast cancer has improved in the last 30 years. That claim is based on the fact that the number of early-stage diagnoses has increased. But Shanahan says not all of those diagnoses turn out to actually be cancerous.

“We're taking all these women and adding them to that denominator so the rate has gone down. Because 40,000 out of 3 million 40 years ago and 40,000 out of 5 million today, obviously the rate has gone down, but the number of deaths hasn't.”

Shanahan is part of a national group of metastatic breast cancer activists, called MET-UP, that is working to remind the public that breast cancer is still terminal for tens of thousands of women. Modeled after the AIDS group ACT-UP, MET-UP aims to instill a sense of urgency around breast cancer, and encourage more research funding.

“40,000 people a year were dying of AIDS in the U.S. at the height of the crisis, and ACTUP formed. And that vocalism, the protests, the die-ins, brought attention. That attention brought federal funding, and now AIDS really is a chronic disease. I would like my disease to be like AIDS. Yeah, I would love a cure, but I will take a chronic illness that people can live with for decades.”

Shanahan says the message that early detection of breast cancer saves lives has masked the fact that it's still terminal in many cases.

Dr. Iain Buxton, who heads the University of Nevada, Reno pharmacology department and studies metastatic breast cancer in his lab, explains.

“They thought early detection cured breast cancer. But we know it doesn't. It only gives you an option to learn more about a specific woman's cancer because you found it early; it doesn't guarantee an outcome.”

That message hasn’t necessarily made it out to the public, according to Beth Caldwell, co-founder of MET-UP.

“It’s ‘if you catch it early everything will be fine’ and there’s this sense that it’s not terminal anymore. That people just have their breast cancer and then they have their treatment and then they’re done and then they get to join this sorority of women with breast cancer.”

Caldwell found a lump at 37, three years before even the earliest suggestions for women to begin getting mammograms.

“For women who are too young for mammograms, like I was, there’s not really a chance to catch it early.”

Dr. Kelly Shanahan caught her breast cancer early, in 2008, treated it, and had been cancer-free for five years when she got her metastatic diagnosis. She no longer had her breasts, but the cancer cells from them had been lying in wait in her bones.

“You know, you can do everything - you can have a bilateral mastectomy, you can do chemo, you can do hormone-blocker therapy if your tumor is hormone receptor positive, and it can still come back. And that's where the problem lies. We don't understand why some cancers metastasize and others don't.”

That doesn’t mean women should stop screening, or that early detection isn’t helpful, Komen's Goulding points out. “Women age 50 to 69 who have regular mammos have a 14 to 32 percent decrease in their risk of dying from breast cancer.”

Komen is starting to respond to increased attention around metastatic breast cancer -- the foundation announced this month it will be putting more of its research funds toward it.

Still, the activists say there's more work to be done to strike a balance between the importance and limitations of screening. They’re also advocating for improvements to the federal cancer database. Currently, it tracks only early-stage and stage-four diagnosis. There is no record of how many early-stage cancers later metastasize or how long that process tends to take. Without basic data on the disease, many wonder how we'll ever get a cure.

Amy Westervelt is a former contributor at KUNR Public Radio.
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