This Cancer Kills 100+ People A Day

Maggie Kudirka was 23, living in New York, and working as a professional ballerina when she found what she thought was a muscle knot in her chest — an occupational hazard for someone with such an athletic job. But she was wrong. “As soon as the doctor said ‘You have breast cancer,’ I burst into tears. The first thing that went into my head was that my life was over,” Kudirka tells Refinery29. She had been waiting for a call-back from the Rockettes, and now she had to move home for chemotherapy. “It was a total shock," she says. But that wasn’t even the worst of it. Soon, she found out it had spread. “When they told me it was in my bones, I was just numb," she says. "I didn’t understand what it meant, really. What is metastatic?” Every October, we find ourselves in a sea of pink ribbons, nearly drowning in breast cancer awareness. But still, too many people are unaware that metastatic, or stage IV, breast cancer is what causes nearly all breast cancer deaths — yearly, that’s 40,000 women, including nearly 1,200 women under age 40, gone. It’s estimated that up to 30% of all breast cancer tumors, even those caught early, will metastasize (a.k.a. spread) to other organs in the body, such as the lungs, brain, bones, or liver. And while the five-year survival rate for women with early-stage breast cancer is 99% (a number worth celebrating), for those with metastasis, that number drops down to just 26%. It is more rare for young women like Kudirka to get breast cancer — about 11% of people diagnosed with breast cancer will be younger than 45 — but when it does happen, the tumors tend to be aggressive, and young women are often diagnosed at later stages, after the disease has spread.

It must be said that we’ve come a long way when it comes to breast cancer awareness. When you consider that, as recently as 40 years ago, it was considered impolite (if not totally inappropriate) to discuss a breast cancer diagnosis openly, the amount of discussion around the disease today is truly unprecedented. Since the first official National Breast Cancer Awareness Month events were held, the number of articles in U.S. newspapers and wires published about breast cancer grew from fewer than 50 each October between 1973 and 1985 to more than 3,000 in October 2005, according to a 2011 study in The Journal of Health Economics. No other disease — perhaps no other cause, period — has been able to reliably capture the attention, year after year, of everyone from The New York Times to your local paper, from the NRA to the NFL. And all of this awareness has led to meaningful progress. Overall breast cancer death rates in the U.S. decreased 36% between 1989 and 2012, according to the latest figures. And smaller strides have been made for metastatic patients as well, says Marc Hurlbert, PhD, chief mission officer for the Breast Cancer Research Foundation and chair of the Metastatic Breast Cancer Alliance. Thirty years ago, the median survival time after a diagnosis of metastatic breast cancer (MBC) was two years; now, it’s three years, and some people can live for more than a decade. But for women like Kudirka, those forgotten survivors who don’t fit the mainstream profile of the disease and who are currently living with it, this incremental progress still means very little.

By the time Kudirka was diagnosed, the cancer had already metastasized to her sternum, spine, and pelvis. Thankfully, the subtype of cancer Kudirka has responded well to a “targeted therapy” drug called Herceptin, and after several months of treatment and a double mastectomy, she found out she had “no evidence of disease” or NED, which means her tumors are no longer visible on scans. This is the best news anyone with MBC can hope for at this point. Kudirka is not considered “cured” — NED simply means that her disease is undetectable by currently available tests. Like any person with stage IV, Kudirka will continue to take oral medications or receive intravenous treatments every few weeks or months for the rest of her life. “There’s no light at the end of the tunnel,” she says. “I have to go into the hospital every single week. I have to plan everything around this appointment for these drugs that keep me alive, but also make me sick, and make it so I can’t dance or live my life.” That’s because, though the tumors are gone, rogue cancer cells may still be in her body, and there’s no way to know for sure how many are still circulating. These may take root later and grow into new tumors. In all likelihood, her cancer will come back, and the odds are on sooner rather than later. “I met my first patient with breast cancer when I was 26, in the 1980s, and for me it was really striking how many young women were in the hospital dying of metastatic breast cancer,” says Matthew Ellis, MD, PhD, a breast cancer physician and metastasis researcher at Baylor College of Medicine in Houston. “Thirty years later, women do better, but it’s still the number-one cause of death from disease in women between the ages of 25 and 50. Metastatic breast cancer takes women in the prime of their lives, and we still don’t have a solution for it.”

Why Haven’t We Found a Cure?
We’ve raised huge sums of money to support breast cancer awareness and research — the Susan G. Komen Race for the Cure program alone, which is arguably one of the most visible breast cancer fundraisers, has generated nearly a billion dollars since it began in the early '80s — yet a true, life-saving cure for breast cancer eludes us. The reasons why are complex. Partly, it’s that breast cancer (and cancer in general) is an inexorable foe. Metastatic cancer adapts, like a virus, and it seems to be more adaptable and hardier than other cancers. “Cancer cells that have moved from breast tissue to other organs have not only survived all the different poisons used to treat the original tumor, but have had to adapt and make so many changes to be able to survive in a completely new tissue environment,” says researcher Barbara Fingleton, PhD, who studies metastasis at the Vanderbilt-Ingram Cancer Center in Nashville. These metastatic tumors continue to evolve, often becoming resistant to medications that appear to work at first. “Every time we throw a new treatment at metastatic cancer, different cancer cells grow out. It’s like a virus or parasite that will do whatever it takes to survive,” she says. Asking why we don’t have a cure for breast cancer, then, is kind of like asking why don’t we have a cure for cancer, period. But it can also be argued that we’ve been blinded by the pink — that it’s easier to believe that breast cancer has been “fixed.” That desire for everything to be warm, fuzzy, and okay has led to a lack of awareness for the deadliest form of breast cancer, says Champagne Joy, an MBC patient and the creator and founder of the hashtag-turned-non-profit #Cancerland. “All those smiling, pink-turbaned women going across the finish line of the 5Ks, [these images are] an overall misportrayal of the disease,” Joy says. “Many women who are diagnosed at early-stage don’t even realize they are at risk for [metastasis, which is terminal.]”

And this lack of awareness has, in turn, undoubtedly affected the amount of research funding directed towards solving the problem of metastasis, which is unsettling considering it causes nearly all breast cancer deaths. Only 7% of research dollars for breast cancer target late-stage disease specifically, per a 2014 study by the Metastatic Breast Cancer Alliance. According to Metavivor, a patient-run MBC organization, the percentage is even lower — just 2 to 3% — if you exclude research on the prevention and progression of metastasis and focus only on treating the patient with already metastasized disease. Right now, clinicians do have a handful of approved treatments for metastatic breast cancer at their disposal, but it’s not possible yet to determine exactly for which patients they will work and for which they won’t. On top of that, medication side effects such as body pain, weakness, and chronic diarrhea can be debilitating. So the question becomes: Are these treatments really extending lives, or are they just extending suffering? “People don’t understand that people with metastatic breast cancer are always in treatment,” says Shirley Mertz, president of the non-profit Metastatic Breast Cancer Network, who has been living with MBC for 12 years. Even if a treatment helps at first, most will stop working after a period of time, and patients must try other drugs (all of which come with their own sets of risks and benefits). “Anxiety goes up and down in waves,” says Mertz. “We wait until our next scan, and if the cancer is stable, we stay on our current medications. If the scan is bad, and the cancer has grown or come back, we change treatments.”

Where We Go From Here
So no, the pink-ribbon movement hasn’t fixed metastatic breast cancer. And in all fairness, it was never meant to: The original goal of the pink ribbon was to increase screening rates, and so in some ways, it makes sense why the current movement tends to focus on the warm and fuzzy messages of early detection. But it’s time to address the other side of the story. In order to end a disease as challenging as MBC, experts say, warm and fuzzy isn’t going to cut it; we need to get loud and angry. What could actually move the needle is a new political movement, similar to the one that evolved around HIV/AIDS in the 1980s and '90s, Dr. Ellis says. “There was an enormous outcry and push to find a cure because AIDS was new and terrifying — and now, instead of AIDS being horrible and lethal, it’s a chronic disease that people can live normal lifespans with, [with] treatment,” he says. “Well, metastatic breast cancer is an old disease, but it's still terrifying. To some extent, people are perhaps desensitized about breast cancer deaths — we’re not as shocked by it as we should be. But as a breast cancer physician, I’m shocked every day.” The good news: Many of the components needed to find a cure are beginning to come together, albeit slowly. “Where we are with metastatic breast cancer is comparable to where we were with early-stage cancer a decade or two ago,” Dr. Hurlbert says. “The overall survival has improved a little bit, and we’re headed in the right direction. The question is: How can we make it go in the right direction even faster?” We’re on the right track, agrees Dr. Ellis. “The rise in molecular medicine, the patient databases, the investigations in the laboratory that help us match drugs to cancer biology are there — now we need to create collaborations to break down barriers and connect all these silos of information.”

Perhaps the most straightforward thing on the list of what we need is an accurate count of metastatic diagnoses. Believe it or not, nationwide statistics on metastatic breast cancer simply don’t exist. National cancer registries such as the SEER database only count new cancer diagnoses, so metastases aren’t tracked unless someone is metastatic when they’re first diagnosed (which doesn’t happen very often). “There’s no data for relapsed patients, so [researchers] have no idea where they are, no idea what subtypes of disease they have, no idea what sequence of therapies they’ve received — we aren’t able to track what happens over time,” Dr. Ellis says. This is often because people’s medical records stay wherever they were treated originally, so when patients move or switch hospitals when their cancer returns years down the road, the records of their disease are scattered in clinics and hospitals all over the United States. It is harder to track, sure, but that doesn’t mean it can’t be tracked. Researchers around the country are trying to bridge this gap by recruiting MBC patients directly through social media and advocacy organizations, and building their own registries, like the Metastatic Breast Cancer Project, led by Harvard’s Nikhil Wagle, MD. Patients who sign up for the project enter all the health information they can remember into the database, send a saliva sample for genetic testing, and also give permission for the researchers to track down and collect their medical records. The project has enrolled more than 2,000 patients — including Kudirka as well as Sheila Marie McGlown, 50, who was diagnosed in 2009 — since it was launched just one year ago. “The MBC Project is addressing some very important issues that I’m concerned about,” says McGlown. “For instance, why is it that in the African American community, the mortality rate is much higher? We're getting breast cancer at the same rate as white women, but we’re dying faster. Also, the MBC Project is gathering information on people’s tumors and their response to treatments so that we can hopefully understand on a molecular level why people have different responses to the same medications.”

Every researcher and advocate Refinery29 talked to said that clinical trials are key to moving the needle towards the cure. But in order for clinical trials to help current MBC patients, it needs to be easier for those patients to find and join the right clinical trial for them. “Right now, no more than about 5% of metastatic patients get into a clinical trial, so of course the therapeutic progress is moving along at a snail's pace,” Dr. Ellis says. “They’re getting drugs that may give them a few months or years of life, but they won’t be cured. They will all still lose their lives.” Studies are also very specific in terms of exactly what type and stage of cancer they focus on, and, up until a couple of years ago, there wasn’t a central place to go to search for them. Truthfully, a real cure probably isn’t possible in our lifetimes, but what is possible is building a movement to make sure stage IV gets the attention — and the funding — it deserves, so we can get there faster. “We’ll be in Washington D.C. on October 13 to rally our Representatives and Senators to make sure that the specific concerns of metastatic breast cancer patients are known,” Joy says. “And we need you to tell your local representative that MBC is important. That’s the kind of awareness that’s not just changing the conversation, but actually changing the course of this disease.” As for Kudirka, she’s more than ready for a change: “We need to get stirred up about it. Early detection just isn’t always the key,” she says. “I hold on now every day for young women, to educate them, to tell them we need to talk about this now, so that when your two-year-old daughter is my age, she doesn’t have to worry.” What To Do Right Now
Want to help? Here are five ways you can make a difference for people living with, and dying from, metastatic breast cancer: 1. Sign this petition, which urges Congress to fully fund national cancer registries so that they can collect accurate statistics on metastatic breast cancer. 2. Join us tomorrow, October 13, in Washington D.C. or on Facebook Live, where hundreds of advocates will be lobbying their representatives. Call your Congressperson with us to let them know you support the Stage IV Stampede. 3. Encourage family members or friends with late-stage breast cancer to look for studies they can participate in at breastcancertrials.org, and to sign up for the Metastatic Breast Cancer Project. 4. Donate directly to research and advocacy groups that focus on metastatic disease, such as #Cancerland, METAvivor, the Metastatic Breast Cancer Network, and the Breast Cancer Research Foundation’s Evelyn H. Lauder Founder’s Fund. Many pink-ribbon products do help the cause, but targeted direct donations go further and make it easier for you to know your dollars are going toward metastatic disease. 5. Donate directly to patients — those you know or those you don't. Search GoFundMe.com for metastatic breast cancer, and you will find multiple patients who need help funding their very expensive, lifelong treatments.