Advocating for Others and Public Awareness

Breast cancer has long been among the most common cancers in the United States and remains a leading cause of death. The disease was largely hidden from public view, however, until the 1950s, when activists, advocates, and celebrities first began to highlight it as a pressing issue. By the 1990s, breast cancer had become–and remains–a model for disease-related activism, as well as a focus of corporate funding and public awareness campaigns.1-3

People we interviewed described their on-going work to improve the lives of others with breast cancer because, as Asante put it, they “want so badly to do something.” Some offer direct help to other individuals with breast cancer. Others focus on making things better for groups of others with breast cancer through activities such as raising money, changing systems, or participating in research. A number of people talked about what it means to them personally to have become advocates. Many also reflected on their responses to the pink ribbon–a widely used public symbol associated with breast cancer.

 

Lisa J. says she has the "gene for advocacy," and there are many ways to do it.

Lisa J. says she has the "gene for advocacy," and there are many ways to do it.

Age at interview: 54
Breast cancer type: DCIS breast cancer
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Okay now let me be a survivor advocate because I was an advocate before with my food work and my community work. You know, I've been a tenant advocate for a while. So, I've always had something to do with that, but now it's like breast cancer advocacy, you know. So if you kind of have the gene for it or the taste for it, it's just a matter of what subject do you want to put in. If you have that level of, of conviction for it.

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That's where advocacy, patient advocacy on that level of, you know, maybe being a reviewer, maybe working with researchers.

Right.

That's the goal. I mean, more patient advocacy and researchers working together for something that is viable and sustainable, of course, right. But like I said, when you see those types that I've described, you know, amazing survivors who pour their life into advocacy, and even if not everybody can advocate, you know. And I'm a big person on that, that not everybody wants to advocate, put it this way. Some people come into advocacy by accident. Some people feel they're forced to. Everyone can in their way. But not everybody feels comfortable speaking out in a certain way. So, maybe there's something else they can do.

Advocating for Other People

A number of people are helping others with breast cancer informally, doing what they can as it arises or making themselves available to family and community. Linda helped others in her support group learn how to improve sex after breast cancer treatment. Asante works in the African American community to address the “systemic history of distrust…of the medical community…that is not going to get broken overnight,” and to encourage people to “know your body” and “talk to each other” about cancer. Janet S. supported a friend whose spouse died of cancer. Lisa J. advocates for men to get screened, telling them “you have breasts!” Precious has encouraged others with metastatic disease to see if their life insurance policy may allow for an early pay-out.

 

Katrina advocates in hospital waiting rooms, speaking up for others.

Katrina advocates in hospital waiting rooms, speaking up for others.

Age at interview: 42
Breast cancer type: Metastatic breast cancer
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Advocacy is when you speak up and take, not take charge, but you want to find a safety for everybody, you know? And this, even with quality of care, if you see something's not right, and you know, you want to be like, even then, out in society or whatever, and you see something not right, you'll be like he was here first. Even though I'm here, he'd been sitting here. And a lot of people don't do that. They just stay in line and knowing that, and I've seen it done to some elderly. Some of them will get snappy, but most of them be like, “Go on.” I said, “No, you go on. You've been here. I can wait. My legs work.” Even though they hurt, you go on. They, you know, their mistake was, we need to start being respectful. That's another thing. This society is not respectful, even with all what's going on. It's just, I don't know. A lot of respect is going out the door. And caring for peoples went way out the door. And just being right for each other. I mean, treat each other right, just treating people right.

 

Ginny wrote up and shares her “recipe” for getting through chemotherapy.

Ginny wrote up and shares her “recipe” for getting through chemotherapy.

Age at interview: 61
Breast cancer type: Invasive breast cancer
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Some people use like support groups. You know, either to swap information or tips or emotional support. Either online or in person. Did you ever?

I didn't, so much. Certainly, I think I got information from [LOCATION] about a breast cancer support group. I don't think I felt the need for it. I drew up something I call my recipe for a low-impact chemo. Because I had, other people came up and told me they had been diagnosed. And so, that was the regimen. And I wrote it down and sent it to my oncologist. Those were the things that worked for me. And I said, these things might help other people. And I did want to share that. So, when I've been told or heard from a family member or friend that somebody else has been diagnosed, I've asked them if they wanted me to share this page thing that I wrote up. And they had to do with, what the drugs might cause and how I dealt with that. And, you know, what I did to alleviate some of the symptoms. So I was happy to share that.

People we interviewed also volunteer their time, talent, energy, knowledge, and resources to help others in more formal settings. Some devote themselves to serving specific sub-groups of those with breast cancer, such as people with metastatic disease or African Americans. Alice provided phone support with a national breast cancer organization. Linda raised money and served as a “buddy” locally. Amy was dedicated to her work as a peer leader in a cancer support organization, but at the same time said she often doesn’t "want to go be a cancer patient somewhere else for an evening where it’s going to sacrifice time with my kids.”

 

Zulma feels satisfaction about her work supporting Latinas with cancer.

Zulma feels satisfaction about her work supporting Latinas with cancer.

Age at interview: 47
Breast cancer type: Invasive breast cancer
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Now that time has passed, I went to take a course to support women with cancer for Latinas. Because there is a lot of help and support for people from here, Americans. But for Latino people who are going through that, unfortunately, there almost isn’t any. So, in the hospital, they told me that if I wanted to be a volunteer to help those people, support them, I told them yes. English, more or less, I understand it, I speak it. And my course I went and took it in English. I passed, and now I feel very, very calm. I feel such a great blessing that I am supporting women. I have supported several people who didn’t want, just like me, they knew that they had cancer and didn’t want to take treatment. They wanted to let themselves die, and I told them no. So, they asked if they would like to talk with someone who has already gone through this, they said yes. Some said no. And I feel very happy because the people I talked with decided to take the treatment and right now they are fine, with their families. Now, they have already had 2 or 3 years of survival. Because I feel happy to be able to help someone else.

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I have always been someone who likes to help people without receiving anything in exchange. But now I feel satisfaction and happiness to know that I have been helping several people, various women, who have gone through that. And when they find me, and they see me, they tell me, “Thank you. Thank you because if it hadn’t been for you coming to me, I don’t know what would have happened with my life.” And I tell them, “I am not a doctor. I am not a priest. I am nothing. Not even a psychologist,” but I can simply tell them and share my experience with them. And I showed them my photos, and they see me now, and they say “Wow,” I mean, it’s something. And I feel great that wherever they see me, people I see, “Can I hug you?”, “Oh, yes,” and they give me a hug. I don’t know. Something has changed for the good, for the good. I don’t regret anything. Not me.

Ahorita que ya pasó el tiempo, yo fui a tomar un curso para apoyar a las mujeres con cáncer, a las latinas. Porque hay mucha ayuda y apoyo para la gente de aquí, americana, pero para las personas latinas que están pasando por eso, desgraciadamente casi no lo hay. Entonces, en el hospital me dijeron que si quería ser voluntaria para ayudar a esas personas, apoyarlas, les dije que sí. El inglés, más o menos, lo entiendo, lo hablo y,mi curso yo fui, lo fui a tomar en inglés, lo pasé y ahorita me siento muy, muy tranquila. Siento una bendición tan grande de que estoy apoyando a mujeres. He apoyado a varias personas que no querían, igual que yo, supieron que tenían cáncer, no querían tomar tratamiento, se querían dejar morir. Y yo les dije, no. Entonces, a ellas les preguntaron si querían hablar con alguien que ya pasó por eso, ellas dijeron que sí, otras que no. Y me siento muy contenta porque a las personas con las que hablé, decidieron tomar el tratamiento y ahorita están bien, con sus familias. También ya tienen como 2, 3 años de sobrevivientes. Entonces, me siento muy feliz de poder ayudar a alguien

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Siempre he sido una persona que me gusta ayudar a la gente sin recibir nada a cambio. Pero ahora siento una satisfacción y una felicidad de saber que he estado ayudando a varias personas, a varias mujeres, que han pasado por eso. Y que me encuentran y me ven, y me dicen, gracias. Gracias porque si no hubiera sido por -que tú viniste hacia mí, yo no sé qué hubiera sido de mi vida. Y les digo, yo no soy doctora, yo no soy ningún sacerdote, yo no soy nada ni psicóloga, pero simplemente con decirles y platicarles mi experiencia y yo les enseñaba mis fotos, y me ven ahora y me dicen, wow, osea, es algo que. Y siento bonito que dondequieraque me ve, la gente me encuentra, ¿te puedo abrazar? Ay, sí. Y me dan un abrazo. Y no sé. Ha cambiado para bien, para bien. Yo no me arrepiento. Yo no.

 

Janice advocates for more Black women to get involved in research and freely shares her own story.

Janice advocates for more Black women to get involved in research and freely shares her own story.

Age at interview: 71
Breast cancer type: DCIS breast cancer
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When I was doing the research that—I found out that more black women die from breast cancer than other women. And, and we have—afnd that's a real problem. And I think maybe a lot of that has to do with the fact that we don't do research; we're not involved in a lot of research, maybe. So, I am always advocating for that. I belong to an advocacy organization. And I have been for the last 20 years involved in advocating for African American growth in women. And so, I'm always looking to bring that to light. You know, during October, I did my part for, you know, breast cancer month. And I was promoting it on my Facebook and Instagram. And I didn't hide myself from—some people don't want it told. And I have had no problem with people knowing that I had breast cancer. And so, I self-disclosed. And so, there was no issue around that for me. And that's a very personal, yeah, it's very personal.

Changing Systems, Awareness and Policies

In addition to helping others directly, a number of people we interviewed are involved in work to build public awareness, raise funds for or participate in breast cancer research, or change policies and systems. Linda worked to get information about cancer support into doctor’s offices. Several people participated in research studies, which Sally described as “kind of a nice way to…be involved, but not on like this emotional level. It’s more intellectual.”

 

Alison has identified and plans to raise issues with the leadership of one of the nation’s large health plans.

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Alison has identified and plans to raise issues with the leadership of one of the nation’s large health plans.

Age at interview: 59
Breast cancer type: Invasive breast cancer
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And one of the things is, there is no way as a consumer of [HEALTHCARE ORGANIZATION] to give them input other than to call their customer service line, where there's a bunch of people answering the phone with scripts. And they say, “You get the standard email, ‘thank you for giving us your inform- ‘” and they send out surveys. And I could fill out their surveys but you know what? I would like a higher-level contact than that. I would like to talk to the CEO of [HEALTHCARE ORGANIZATION]. I would like to talk to whoever deals, you know, I don't know. I want to talk to the chief of oncology. I want them to understand that our experience isn't what it should be. I also would like [HEALTHCARE ORGANIZATION] to take a leadership role in kidney treatment. I don't think that I should be getting an oncologist who says, “I will only prescribe the standard of care.” [HEALTHCARE ORGANIZATION] should be creating the standard of care, not following it, you know? [HEALTHCARE ORGANIZATION] has a stake as a global capitated healthcare system, and one of the very few in this country. They have a stake in keeping us as healthy as possible. So, if there are things that we could have been doing to reduce the risk of cancer or to treat it better once it happens so that it doesn't come back 10 or 20 years down the road as, say, a sarcoma that's much more likely to kill you, then I feel like they should be doing those things. [HEALTHCARE ORGANIZATION] has the resources to do research that isn't influenced by pharma. I would like to see them do that. You know? So, I am very interested in getting to some [HEALTHCARE ORGANIZATION] leadership and giving them some feedback. And I think that I can give them some feedback that, maybe nobody else would have the nerve to give them. One of the benefits of working in health field for 30 years is that doctors do not intimidate me. I don't think they're Gods.

 

Lisa J. learned about advocacy at the "highest level" from Project LEAD.

Lisa J. learned about advocacy at the "highest level" from Project LEAD.

Age at interview: 54
Breast cancer type: DCIS breast cancer
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I took this course called Project Lead, where I spent a week out in San Diego with the National Breast Cancer Coalition. And it was an amazing time. You know, I'm not even a closet, you know, research, I love that. I just love that part of research and learning. And I was still in the throes of, you know, my lupus and, you know, getting the surgery for my thyroid. And so, I'm out there, and I'm with women that have, you know, survived all these years, and so, I mean, you know that organization. It's really like the SWAT team in terms of the cancer community. And you're there with incredible researchers, doctors, and every day is a new panel, and all of this. And the advocacy at the highest level and these amazing women that you meet that are really ferocious fighters. And are living with metastatic breast cancer.

A number of people share their own stories in whatever ways they can. Peggy, Zulma, Janice, and others post on social media. Michelle gave a keynote speech at a breast cancer event in her community. Some mentioned that they participated in the Health Experiences Research Network’s breast cancer project we are reporting on here as a way to help others. Others raise awareness by participating in public events like breast cancer awareness walks.

 

Merle wants to share their story to enter a larger public dialogue and hopes to promote more connections among non-binary people with cancer.

Merle wants to share their story to enter a larger public dialogue and hopes to promote more connections among non-binary people with cancer.

Age at interview: 37
Breast cancer type: Metastatic breast cancer
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But, I guess, I just want to put it out there that this is a part of my creative work. And like, you know, I share openly about this. And so, also, I'm interested in participating in larger dialogues about this. And actually that's been something that I haven't really figured out how to do that in terms of, I have done forensics or debate or public speaking in the past. And part of sharing my story feels like, I do want to find ways to enter into a larger dialogue. And there's a non-binary, black femme cancer, breast cancer survivor named [NAME], who I've been following on social media. And, you know, so it's like they are out there, putting   their story out there about their own breast cancer journey.

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And I just kind of feel like there just really aren't that many people out there coming from these So this is a very kind of roundabout way of saying, though, that I'm sharing this because I want to be a part of larger dialogues, but also that if there are others out there. Sometimes I think it's about finding each other, you know, and that sometimes when these narratives become more public, it's easier for people to find each other. So, I'm using [NAME] as an example of, their story was one of the few that I could find out there, where I was like, oh, I actually want to see more of this. But there's actually not a ton out there. I am a part of some Facebook groups for like non-binary or trans cancer patients. But it's a relatively small group. But, you know, it's like, I know those people are out there. We are out there. It's just that it's kind of just about how to bring more of these stories forward.

 

John gets the word out that “men get breast cancer.”

John gets the word out that “men get breast cancer.”

Age at interview: 60
Breast cancer type: Invasive breast cancer
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So, I was just never afraid of it. I was never embarrassed. A lot of men feel embarrassment by it. You know a lot of men; they just don't want to talk about it. So, for me, that was never an issue.

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I wanted to get the word out. It was interesting because my cancer came in the month of October, November, both times. And I was going to work and buying a Diet Coke at the gas station and paying a dollar for a paper ribbon for breast cancer research. And I thought, ‘Wait a minute. We don't talk about men.’ I am, and I would do it. And I'd do it two or three times. So, I got the ribbon. I got the marker. And I wrote as large as I could, ‘Men get breast cancer’. And I put my full name. And I said to the clerk, “Would you please put this right here at the register right up front because I want people to see it?” I went to a 5K run and walk, and I went by myself. I kind of knew what to expect, what it was about. But I didn't feel I had a voice because there were hundreds of people. And I didn't think to bring a sign that said, ‘Men get breast cancer’. I just went. And I wore my breast cancer shirt. But I really, you know, kind of felt like I didn't know how to make my voice heard. So, when I came back the following year, we went. And my wife and daughters came. And they made signs. And I talked to my doctor. And I was able to, she talked to the organizer of the run. And I got to go and go on stage and hand out the awards for the runners in their various categories, first, second, and third place. But I also got to get up in front of 250, 300 people. And I got to say, my name is John, and I'm a male, two-time male breast cancer survivor, and ‘thriver’.

 

Amy raises awareness about having an illness that’s hard to see.

Amy raises awareness about having an illness that’s hard to see.

Age at interview: 37
Breast cancer type: Metastatic breast cancer
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I mean, I live, I live in the South. I live in a rural area. And I still, I met with people, when I'm very open about my disease and not in a way that is designed to garner sympathy, but just to raise awareness. Like, there's a lot of people with seemingly invisible illnesses. We should talk about that. We should acknowledge that. And some, in a lot of ways, metastatic breast cancer in a young person especially feels like an invisible illness. Because, you know, I could have a handicapped placard on my car. But if people saw me walking from my car to Walmart, they would be, “you're not handicapped. You can walk. There's nothing wrong with you.” Never mind that “well, I got mets in my sacrum, and my back hurts, and my arms hurt from metastatic disease.” And, you know, but nobody’s going to, you don't wear a NASCAR t-shirt that says, “here's all the diseases I have in my body that you can't see on the outside” because I'm not limping or in a wheelchair.

Many people we interviewed participated in fund-raising events such as breast cancer walks, donate to breast cancer organizations, or take on fund raising responsibilities. Many take pride and satisfaction in these activities. As Linda put it, she “helped raise money because…I felt that I had been the recipient…of the research.” Other people have mixed feelings about these fundraising activities. Becky is careful about donations because her research shows that “some of the biggest [breast cancer organizations] have terrible track records for how they actually spend the funds.” Ginny finds repeated fundraising calls from cancer organizations “extremely offensive.” June makes her own financial contributions for breast cancer but responds “I’m not doing that” when asked to get donations from others.

Becoming an Advocate

A number of people described how they came to be advocates, and the role advocacy plays now in their lives and identities. Lisa J. was always an advocate around issues important to her but turned her attention to breast cancer once she was diagnosed (see above). Susan started a breast cancer organization after her diagnosis, and still has a thriving career leading this work. Sally was completing training in patient advocacy and said her “dream job” would be to work as an advocate in the hospital near where she lives. Amy successfully advocated to organize a support group for people with metastatic disease where she lives.

 

Michelle found passion for a career in advocacy through her breast cancer.

Michelle found passion for a career in advocacy through her breast cancer.

Age at interview: 47
Breast cancer type: Invasive breast cancer
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Oh, the one thing that I did not say-- that when I was talking about figuring out that I wanted to become an advocate for breast cancer and for women, is that last year when I when was at the survivor luncheon, I said that my goal, going forward, was in three years to be the speaker, the keynote speaker for the luncheon, and to be promoting a book. Well, I haven't written my book yet, but this year, one year later, I am the keynote speaker for the [event], which is in October.
The theme for the event is Twinkle Twinkle, You're the Star. And they're honoring all the survivors locally. But my speech is how I found my twinkle. And while that might not necessarily be my phrase, it's true. I have found something in my life because of the cancer that I've become very passionate about. And it is going to be my career for the rest of my life. And so I am honored to be talking about that. So I was lucky enough to figure out a new goal and a new hope from the cancer. And if I can share that with other women and to show that, hey, like my story is not so special, but the things that I found inside myself and from the support that I have, you can do amazing things.

Mixed Reactions to the Pink Ribbon

We asked people we interviewed what the symbol of the pink ribbon means to them and found that almost everyone had a lot to say. Some had a positive association. Alice said if pink makes breast cancer sexy so “you can raise money, then, bring on the pink!” Maria de Los Angeles noted that the ribbon makes her happy. For Linda, it meant “we are survivors.” Other people had trouble with the pink ribbon because they felt it represents mainstream breast cancer but does not speak to or include (for example) people who do not identify as women, people with metastatic disease, people with DCIS, or men.

 

The pink ribbon connects Linda to other survivors.

The pink ribbon connects Linda to other survivors.

Age at interview: 63
Breast cancer type: Invasive breast cancer
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What's your feeling about the pink ribbon?

Well, this is going to sound a little bit trite, but I liked the slogan that Susan G. Komen used the last two years of being more than pink. Pink is great, but we are more than pink. We are survivors and the battle that we fight and is important to us to come out as survivors, to share our stories, and to wear that pink ribbon. But we are so much more. And I believe that. So yes, I support that. I, I have worn my T-shirts that say, survivor 2016 on the back. And I will have, my daughter and I went to Universal and Disney World, and I had people, didn't realize that they were looking and people would touch me and say, “congratulations. You're a survivor.” And, or you'll have people say, like I'll wear my hat that says, “Fight like a girl” and it has a swoosh, pink swoosh on it. And they'll say, “Are you a survivor?” And I say, “Yes, I am. Two and a half years.” And she'll go, “Five years.” “22 years.” It's amazing. It's wonderful. It, it's like, I'll be walking on the beach and someone will, I'll have my hat on and somebody will stop me and say, “congratulations. Just wanted to let you know I'm a survivor.” And I had a man stop me in October and said, “I had liver cancer and I'm a survivor.” It's the club you never really wanted to join. I think I told you that the first time we spoke. I've realized that, but after you get in, you meet wonderful, wonderful people who are doing the same thing you did. And so, there is some strength in, in that companionship.

 

Carrie objects to the pink ribbon for a few reasons.

Carrie objects to the pink ribbon for a few reasons.

Age at interview: 54
Breast cancer type: Invasive breast cancer
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 It just makes me want to puke. I did the Komen and honestly, Komen, I got certificates so I could get some acupuncture to help me with my nausea. I got, it paid for my wig. So, they did—I mean, on a very personal level, I saw benefits of Komen fundraising. And then there was all that political fallout, and that was really hard, and, and that's when I kind of had to walk away from that. But I did do the walk one year. But it's, yeah it is definitely, you know, the sexy cancer in a weird. And I think it’s just shows you what society values. Yep. And it’s because, “Oh, my god. A woman's breast. She's losing her breast.” As if, as if that loss is just so much more traumatic than losing your ovaries, or a third of your colon, you know, or a kidney. Part of that, I think, is what I find also kind of distasteful is I just think it's massive sexism. Because that seems to be the most important thing. And actually, when I had my first breast cancer, I sent out as a joke - but it was really fun - to my, a challenge to my friends. And that was come up with the most absurd breast cancer product crossover. So, I got, yeah, I still have my breast cancer dog toy. But somebody was like, there were breast cancer mud flaps, breast cancer rugs, breast cancer bottle openers. And it's just, it is just endless. You know, and then you think of poor colon cancer, and you're like what's its color? Brown? I mean, nobody's like, does it have a color? It has a month? What? Do, you know, nobody wants to sit around and talk about it. Nobody wants to put it up on their billboard. So, yeah. It’s really interesting how breast cancer is like the little darling of all the cancers.

Many of our participants described complicated feelings about the pink ribbon. Some have come, since their own breast cancer experience, to feel personally supported when they see the ribbon, while at the same time worrying about all the people with other kinds of cancer. As Denise put it, “I think it's absolutely amazing and wonderful that there is so much focus on breast cancer. But the sad part of stuff is other types of cancers, and why aren't they getting that much focus?” Other people said they respect the ribbon because it “claimed a space” for breast cancer, but wish it wasn’t pink since that color is “girly” and not inclusive enough. Still others appreciated the ribbon, yet worried that the funds raised through breast cancer awareness are not used for good purposes such as cancer cures, or to address the unfair impact of breast cancer on African Americans. Lisa S. and Michelle talked about how they didn’t relate to the ribbon at first but had come to do so over time.

 

Chelsea is thankful for the pink ribbon, but it raises many questions for her too.

Chelsea is thankful for the pink ribbon, but it raises many questions for her too.

Age at interview: 30
Breast cancer type: Invasive breast cancer
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So, there's a lot of public acknowledgment around breast cancer with the pink ribbon, and a lot of public awareness. How do you feel about that, when you see the pink ribbon or it's Breast Cancer Awareness Month, that kind of thing?

I'm for the most part okay with it. I think October can get a little bit overwhelming. You know, when it's November 1st, there's sort of, like, a relief that you don't have sort of those, like, constant reminders. Especially some of the more, like, insensitive types of campaigns that you sometimes see around Breast Cancer Awareness Month. You know, I'm sort of the opinion that, you know, the more awareness, the better, no matter the form it comes in. It definitely does frustrate me when I'll see people or brands putting a pink ribbon on something and really not tying it back to anything other than just, like, a way to generate more sales. But, you know, there's no actual donation on the back end or things like that. You know, that's rough, because you know my personal experience was very difficult, and it's not for you to just use as like a marketing ploy. But I do think those are probably few and far between, I would hope. You know, most things are backed in like some way or another, I would hope. I was reading something online - I don't remember what it was -  and I think it was some sort of resource for young adults with cancer, all types of cancer. And, you know, someone made a comment that, oh, gosh. I'm trying to remember what the exact comment was but, basically, the thought was, you know, they were feeling sad that they didn't get a cancer like breast cancer that has all this awareness and research, and money, and fundraising going towards it. You know, they were sort of like, "Well, why didn't I get breast cancer? Like, everyone knows about that, and everyone campaigns for that," and things like that. And it was just something that I had literally never thought of. And I felt bad about it—I felt, like, really bad about it, that I got the type of cancer that people rally behind. Whereas there were so many other types of cancers that young adults get, or old people get, that people don't know about and people don't do anything for, and they just fall by the wayside, kind of. And ever since I sort of heard that or read that, definitely been more cognizant of all of the awareness around breast cancer, and I'm thankful for it because it is my personal story. But at the same time, it's spread it out for some of the other diseases out there.

 

Amy says the pink movement has helped breast cancer but leaves out those with metastatic disease.

Amy says the pink movement has helped breast cancer but leaves out those with metastatic disease.

Age at interview: 37
Breast cancer type: Metastatic breast cancer
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But so, I think that the pink movement helped with that, and it helped to normalize it a little bit and give a little bit of sisterhood to that. But now, it's sort of come to bite us. Because now, there seems to be a sisterhood in the early-stage world, where you're in it, and you fought it, and you’ve beat it, and yay. But the metastatic people aren't part of that conversation, because we're still in it, and we're always in it. We're in it until our treatments stop working. And when that bell rings, it's a heartbreaker. Because when that bell rings for me, when I ring that bell, that means I've finished a treatment I can't do again. That doesn't mean I'm done. So, so, that's, that’s kind of a microcosm of, of where the pink movement is juxtaposed with the metastatic patient.

Is there a movement for women with metastatic disease?

There is.  And if we could quit dying, we could get a lot more done. We have lost such powerful advocates in the past year or so. Pretty much all of the founders of an organization called metup.org are dead. One of them just passed away within the past month. We lost a lot of wonderful women in October, ironically, Pinktober. So that's, that’s the hardest thing, because the metsters can't get it done. We can't get it on ourselves. We have to have early-stagers on board with us. We have to have people that don't have cancer on board with us to understand the need specifically to save patients who are already sick. Because prevention is not going to help us. Being vegan is not going to help us. Drinking more water, getting exercise, thinking positive, none of those things are going to stop the disease at all. We need researchers to help us do that. They need funding. We need to make an appeal to where that is as popular is going to buy a pink blender. And the thing with the pink stuff is, more pink blenders doesn't mean more dollars.

Others we interviewed associate the ribbon with corporate or pharmaceutical funding. Though many people were grateful for the resources this brought to the breast cancer movement, corporate involvement also raised suspicions and doubts. Some were concerned that the pink ribbon had been co-opted to increase corporate profits, others that it was a distraction from more important healthcare reforms. As Becky put it “I think 95% of it is crap…if you're not going to have the resources available to people to get mammograms and then affordable treatments and everything then, good job. You put a pink ribbon on it.”

 

Sally had mixed feelings about the motives for corporate support of the pink ribbon.

Sally had mixed feelings about the motives for corporate support of the pink ribbon.

Age at interview: 63
Breast cancer type: Invasive breast cancer
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I have really mixed feelings about it. I think, yeah, I mean, breast cancer should get no more publicity than any other kind of cancer, but because it's a female cancer, and I think businesses know that women tend to shop more, I mean, it's all a ploy. I mean, really how much does that really bring to breast cancer research, and how much does it really just increase their sales? I mean, when I saw the pink label on a soup can, I was like, “OK, all right. That's going too far, really?” So, I think they're playing us. They're using us.

 

For Nikki, the pink ribbon campaign focused attention on the wrong “fight.”

For Nikki, the pink ribbon campaign focused attention on the wrong “fight.”

Age at interview: 42
Breast cancer type: Metastatic breast cancer
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It's commercialized. And whether that's good or bad, I think, can be based on the perception you're seeing or what you want to take away from it. I think the more awareness, the better. But who's really helping with that is

You know, like I talked before, like insurance.

If we fight against, maybe, the insurance companies to allow more testing at younger ages. Especially with families that are impacted, like that would be a good battle.