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Metastatic breast cancer: the disease that doesn’t come all tied up in a pretty pink ribbon

Christine Norton: “I think that metastatic breast cancer has not received the level of funding and attention that it deserves.”

Greenfield Police Department's pink handcuffs.
Greenfield Police Department

It’s Breast Cancer Awareness Month, and that means we find ourselves saturated yet again with countless “pink ribbon” products and activities, which claim to be raising awareness — and sometimes money — for breast cancer, but are really little more than feel-good marketing campaigns for the companies or organizations involved. 

This year, even police departments have “gone pink.” In Greenfield, Massachusetts, for example, some police officers are using pink handcuffs to arrest people. In Sarasota, Florida, officers have the option of wearing pink police badges this month. And many police departments across the country have added pink patrol cars to their fleets. 

“If we change the look of the police cruiser, maybe we’ll change the way we look at breast cancer and breast cancer survivors,” said a police chief in Connecticut.

Just how a pink police cruiser or any other of these “awareness” efforts are going to lead to action that will actually help find a cure for breast cancer is never really explained. As I’ve noted here in past years, very little of the money raised by “pink ribbon” product sales is actually channeled into research.

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Needless to say, many women with breast cancer are frustrated — and often disgusted — by pink ribbon marketing. As the website for one group of advocates, Breast Cancer Action, makes clear, pink ribbon culture “defuses anger about breast cancer and its devastating impact, and distracts us from the meaningful actions that will achieve health justice for us all.”

It also obscures “the harsh reality of breast cancer by creating a single story of triumphant survivorship based on positive thinking, beauty tips, and sanitized, carefully chosen images of women,” the website adds.

In an effort to try to focus the public’s attention this month on the non-pink (non-sanitized) reality of breast cancer — and on meaningful action — advocates have declared today, Oct.  13, Metastatic Breast Cancer Awareness Day. Metastatic breast cancer is advanced (stage IV) cancer, which means it has spread beyond the breast and the lymph nodes under the arm to other areas of the body, usually the bones, lungs, liver or brain.

Women and men with metastatic breast cancer often dread October because their disease — which is currently incurable — does not fit into the upbeat I-was-diagnosed-with-breast-cancer-but-caught-it-early-and-have-been-cured! stories that the public and the press seem to prefer this month.

To better understand the growing movement to support people who are living with metastatic breast cancer — a movement that is also pushing aggressively for more research funding to develop a cure for this devastating form of the disease — MinnPost spoke recently with Christine Norton, co-founder and president of the Minnesota Breast Cancer Coalition, which is part of the grassroots advocacy group the National Breast Cancer Coalition. Norton is a retired schoolteacher, and was diagnosed with breast cancer herself 25 years ago when she was in her early 40s. An edited version of that conversation follows. 

MinnPost: Why has it become necessary to set aside a specific day to focus on metastatic breast cancer?

Christine Norton: Because that’s what’s killing women from breast cancer. Metastatic breast cancer has received far too little research attention, as well as attention from the general public. Fortunately, that’s starting to change, but it seems to me that it’s just at the beginning of changing.

MP: Most of the awareness messages during Breast Cancer Awareness Month are about getting mammograms. Very, very little is said about metastatic breast cancer. Why is that? Is it just too frightening?

CN: I think there are several reasons, including, as you mentioned, it being frightening.  Metastatic breast cancer is not “pink.” It’s not pretty. It’s not something that is going to go away. It will kill the woman or man who has it, and so I think people are more comfortable embracing a simplistic “awareness” message and draping themselves in pink clothing and perky “Think Pink” products and believing that they have made a difference. 

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From talking with friends of mine with metastatic breast cancer — and I’ve lost, as you know, many over the 25 years of my work on breast cancer — I know that this month of October, with its tsunami of pink proclamations and products, is painful. It reminds them that their disease is not this simplistic awareness message. Their disease will kill them. Their disease impacts every aspect of their daily life. Their treatment and its side effects are very significant. They have lots of medical appointments for treatments and radiation and scans. Their disease is a constant aspect of their life, every single day. And so this month can be painful for them. 

MP: You said you’ve noticed a change in recent years. What does that change look like?

CN: I think some people have become more aware, fortunately, that just buying a product is not enough. I think some people have become more aware that the message that catching it early guarantees a cure is false in some cases. I also think that the growth of some organizations [such as the Metastatic Breast Cancer Network and Breast Cancer Social Media] around metastatic breast cancer and the advocacy that they’re joining together on is starting to make a difference. I don’t believe it’s a significant enough difference yet, but they’re working as hard as they can, and they’re working in every avenue from traditional media to every platform of social media.

And a lot needs to be done. As the Metastatic Breast Cancer Network states on its website, only 7 percent of the $15 billion invested in breast cancer research from 2000 to 2013 by the major government and nonprofit funders in the U.S. and the United Kingdom was spent on metastatic-focused research. 

MP: Where is the rest being spent?

CN: It’s focused on myriad areas of treating primary breast cancer [cancer that has not spread beyond the breast].

MP: You’d like to see a broader focus.

CN: Yes. We’d very much like a wider focus. As you know, I work with the National Breast Cancer Coalition, which has been fighting to end breast cancer since 1991, and we are focusing our efforts [through the group’s Artemis Project] on two areas. One is on the prevention of primary breast cancer, and the second is to find a way to prevent metastasis, which is what kills people.

Keith Knutson from the Mayo Clinic was recently awarded, via his work at the Mayo Clinic in Florida, a very significant multiyear grant from the Department of Defense Breast Cancer Research Program. He was awarded $13.3 million dollars to test a vaccine designed to prevent the recurrence of triple negative breast cancer, which is a subset of breast cancer. There are currently no targeted therapies for it, although, of course, chemotherapy is used.

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MP: You’d also like to see a different awareness message about DCIS [ductal carcinoma in situ].

CN: Yes. I wish that people were more aware of some of the recent studies that have come out on DCIS and the need to really do a very thoughtful shared decision-making process about treatment when someone is diagnosed with it. The research suggests that people need to be more open to considering watching waiting. Years ago, Malcolm Gladwell quoted a researcher who said that one of the worst things done regarding DCIS was putting the word carcinoma in there, because it is not cancer. But when people hear the word carcinoma, they immediately jump to cancer and death.

A recent study found that, yes, there are three subgroups that seem to have more aggressive DCIS, but most women are not in those subgroups. If a woman is not in one of those subgroups, she should really consider watchful waiting rather than going through the whole cascade of what could be truly overtreatment. 

MP: The National Breast Cancer Coalition has set a very admirable and ambitious goal of ending breast cancer by January 2020. Are you hopeful about meeting that goal? 

CN: I’m hopeful, but I’m also realistic. Obviously, the deadline date is rapidly approaching, but we are making progress. The National Breast Cancer Coalition is very open, as always, about all of its activity going forward on the Artemis project, and each year it publishes on its website the results of that work from the past year. We also have legislation in Congress to establish a Commission to Accelerate the End of Breast Cancer, which currently has the support of 42 Senate co-sponsors and 175 House co-sponsors, including, I’m happy to say, nine out of 10 of Minnesota’s congressional delegation. 

MP: Who is that tenth legislator who isn’t supporting the bill?

CN: My very own representative, John Kline, who says he does not support any disease-specific legislation. I believe, and this is my personal opinion, that he may think this is leadership, but I believe that people are elected to make decisions like this. Yes, many disease groups come and ask for their support on things, but I believe it’s up to the representatives and senators and their staff to look at what they’re being asked to support and then make those hard decisions.

MP: Has the past research emphasis on primary breast cancer held us back at all from finding a cure for metastatic breast cancer?

CN: The emphasis on primary breast cancer is very important, of course, because that obviously impacts most of the more than 200,000 women and men who are diagnosed with breast cancer each year. I’m not saying we shouldn’t do research on primary breast cancer. But I think that metastatic breast cancer has not received the level of funding and attention that it deserves, and I think that the awareness message has not led to action that is meaningful. Instead, it has led, in my opinion, to a lot of fear  — often, inappropriate fear. As you know, more women die of heart disease than die of breast cancer.

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After 35 or so years of breast cancer awareness messages, I think people are aware of breast cancer. I think we need meaningful action, and that’s what I believe the National Breast Cancer Coalition and other groups are working to achieve — meaningful action, not just awareness.