{"id":31467,"date":"2022-10-07T01:17:00","date_gmt":"2022-10-07T01:17:00","guid":{"rendered":"https:\/\/www.lifeandnews.com\/articles\/?p=31467"},"modified":"2022-10-09T16:27:30","modified_gmt":"2022-10-09T16:27:30","slug":"breast-cancer-awareness-campaigns-too-often-overlook-those-with-metastatic-breast-cancer-heres-how-they-can-do-better","status":"publish","type":"post","link":"https:\/\/www.lifeandnews.com\/articles\/breast-cancer-awareness-campaigns-too-often-overlook-those-with-metastatic-breast-cancer-heres-how-they-can-do-better\/","title":{"rendered":"Breast cancer awareness campaigns too often overlook those with metastatic breast cancer \u2013 here\u2019s how they can do\u00a0better"},"content":{"rendered":"\n

Rachel Kraus<\/a>, Ball State University<\/a><\/em><\/p>\n\n\n\n

Is there anyone who isn\u2019t aware of breast cancer?<\/p>\n\n\n\n

Since 1985, cancer-related nonprofits, along with pharmaceutical firms and other businesses, have sponsored an international campaign to observe October as \u201cBreast Cancer Awareness Month<\/a>.\u201d During these weeks, the public is bombarded with awareness and education messaging featuring the campaign\u2019s symbol, a pink ribbon.<\/p>\n\n\n\n

A wave of pink products typically appears, too, including clothing \u2013 think about the \u201cSave the Ta-Tas\u201d shirts<\/a> \u2013 as well as events like marches and walkathons. This onslaught has led some to term the campaign \u201cPinktober<\/a>.\u201d<\/p>\n\n\n\n

These efforts often focus on encouraging women to get screened with mammograms to increase the possibility that the cancer will be detected early. Breast cancer patients are celebrated for \u201cbeating\u201d cancer, \u201cwinning\u201d the battle, having survived and being cured. But these messages overlook the experiences of millions of breast cancer patients.<\/p>\n\n\n\n

I am a sociology professor<\/a> who specializes in studying gender as well as how having a serious illness affects identity. These themes also hit close to home for me: In 2009, I was diagnosed with metastatic breast cancer \u2013 also referred to as stage 4 on a scale from 0 to 4 \u2013 which means a cancer that has spread beyond the breasts to other parts of the body. Since that time, I have participated in face-to-face and online support groups, joined retreats and met myriad health professionals who specialize in oncology while also continuing my research.<\/p>\n\n\n\n

In 2019, I began a nationwide study to examine the experiences of women with stage 4 breast cancer. The first of my papers on religion\u2019s role in coping with metastatic breast cancer was recently published<\/a> in the Journal for the Scientific Study of Religion. I am now working on research that examines metastatic breast cancer and a range of spiritual experiences.<\/p>\n\n\n\n

The seriousness of metastatic breast cancer, which is the only breast cancer that kills, is rarely discussed. This leaves people with this diagnosis feeling ignored and angry \u2013 and largely invisible to most of the organizations focused on breast cancer.<\/p>\n\n\n\n

A need for inclusion<\/h2>\n\n\n\n

Breast cancer is the second most common cancer in women<\/a> in the U.S. after skin cancer. One in 8 American women<\/a> will be diagnosed with breast cancer at some point in her life.<\/p>\n\n\n\n

Although women of color<\/a> are less likely to get breast cancer, they are more likely to die from it. Male breast cancer<\/a> makes up less than 1% of all cases of breast cancer.<\/p>\n\n\n\n

Nearly 30% of people with early stages breast cancer<\/a> will see their cancer metastasize to stage 4, which kills about 44,000 American women and men<\/a> each year.<\/p>\n\n\n\n

\"Georgia
Breast Cancer Awareness Month events, like this display by Georgia Bulldogs football fans, often aim to encourage women to get mammograms, which can detect the disease in its early stages. Kevin C. Cox\/Getty Images Sport via Getty Images North America<\/a><\/figcaption><\/figure>\n\n\n\n

To find participants with stage 4 breast cancer for my survey, in 2019 I sent out requests through online support groups, cancer organizations and societies, and word of mouth. Ultimately 310 women completed a questionnaire about their experiences with metastatic breast cancer, such as perceived support, feelings about breast cancer organizations and the pink ribbon, and ways of coping.<\/p>\n\n\n\n

I selected 33 of those women to participate in in-depth interviews to provide additional information about some of their survey answers.<\/p>\n\n\n\n

Recognizing people with metastatic disease<\/h2>\n\n\n\n

I\u2019m a member of several metastatic breast cancer social media groups. For the purpose of this article, I asked people in these groups to share their thoughts about Breast Cancer Awareness Month and specifically the term \u201csurvivor.\u201d Most people who responded aren\u2019t overly excited about October: They don\u2019t find terms like survivor and related language relevant. Nor do they feel the pink ribbon represents them.<\/p>\n\n\n\n

Of the women who took my original survey, the majority \u2013 at least 70% \u2013 felt that pink-ribbon events tend to minimize the seriousness of metastatic breast cancer and tend to ignore stage 4 altogether. They also believe that pink-ribbon campaigns focus too much on breasts and selling products and services, a practice known as \u201cpinkwashing<\/a>.\u201d<\/p>\n\n\n\n

As one respondent in a social media group wrote, \u201cI don\u2019t like the term survivor. That and October are aimed at early stage cancer, not at supporting people who have Stage 4 cancer. We won\u2019t survive. We aren\u2019t going to be cured. Early detection didn\u2019t save many of us. Removing boobs didn\u2019t save us. All the pinkwashing does nothing to help us.\u201d<\/p>\n\n\n\n

Asking women to rate their preferences on a scale of 1 to 4, from \u201cnot at all\u201d to \u201ca great deal,\u201d I found that far more metastatic people prefer \u201cpatient\u201d and \u201ca person who has cancer\u201d over the term \u201csurvivor.\u201d<\/p>\n\n\n\n

On average, many participants also say there isn\u2019t much recognition that those with metastatic disease have a different treatment plan. Often, stage 1 to 3 patients can look forward to a treatment end date after they finish radiation, surgery \u2013 mastectomy or lumpectomy \u2013 and what are called systemic therapies, such as chemotherapy. The vast majority of metastatic patients will be in treatment for the rest of their lives.<\/p>\n\n\n\n

For stage 4 breast cancer, there is some debate<\/a> as to whether lumpectomy or mastectomy are effective options. The effectiveness of radiation treatment is also debatable<\/a>. So metastatic patients more typically receive chemotherapy and \u2013 more recently \u2013 immunotherapy, with no surgery.<\/p>\n\n\n\n

I also learned that many stage 4 breast cancer patients find it necessary to manage the diagnosis in ways that don\u2019t apply to those with earlier stages. Metastatic patients must go into treatment simultaneously hoping the drugs will calm the cancer and confronting potential end-of-life issues. They may worry about leaving their families. Some may set milestones, such as seeing their children or grandchildren graduate from school or get married.<\/p>\n\n\n\n

They may also be contending with issues like how many possible treatment options are left, or maximizing both quantity and quality of life amid a range of side effects.<\/p>\n\n\n\n

Overturning worn-out narratives<\/h2>\n\n\n\n

I surveyed participants about the degree to which they feel excluded from breast cancer organizations, and why. They firmly indicated feeling a recognition gap among breast cancer organizations and awareness campaigns. So many seem to emphasize early detection and survivorship, and leave out the concerns and needs of metastatic patients.<\/p>\n\n\n\n

One respondent talked about the \u201cearly detection mantra.\u201d Another referred to the \u201cringing of the bell,\u201d a common celebratory ritual when one is done with chemotherapy or radiation. I\u2019ve been known to use the phrase \u201cthat damn bell\u201d to express frustration that I will always be on treatment and won\u2019t get to ring that bell.<\/p>\n\n\n\n

People echoed these same sentiments when I posed my question in social media groups. One woman wrote, \u201cI am not going to ever be a survivor. Feels like we are the under belly. \u2026 No \u2018you got this.\u2019 \u2026 There is no stage 4 fanfare.\u201d<\/p>\n\n\n\n

Many women with stage 4 breast cancer also feel like little is being done to showcase the less optimistic and more frightening aspects of metastatic disease.<\/p>\n\n\n\n

Several organizations are starting to fill these gaps. Some are devoting themselves to funding research for breast cancer, while others are now paying more attention to stage 4 patients \u2013 or at least moving in that direction. Metavivor is one organization<\/a> focused exclusively on serving the metastatic breast cancer community. The Susan G. Komen organization has also begun offering resources and information about metastatic breast cancer<\/a>.<\/p>\n\n\n\n

I see hopeful signs that some of these efforts are making a difference. Just the other day, I stopped by my cancer center\u2019s gift shop to buy some mastectomy bras and saw that they were handing out pink-ribbon bracelets. So I asked the woman running the shop if they could get bracelets representing metastatic breast cancer. I was encouraged that \u2013 without hesitation \u2013 she said it shouldn\u2019t be a problem.<\/p>\n\n\n\n

This is an updated version of an article originally published on Oct. 29, 2021<\/a>.<\/em><\/p>\n\n\n\n

Rachel Kraus<\/a>, Professor of Sociology, Ball State University<\/a><\/em><\/p>\n\n\n\n

This article is republished from The Conversation<\/a> under a Creative Commons license. Read the original article<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"

Rachel Kraus, Ball State University Is there anyone who isn\u2019t aware of breast cancer? Since 1985, cancer-related nonprofits, along with pharmaceutical firms and other businesses, have sponsored an international campaign to observe October as \u201cBreast Cancer Awareness Month.\u201d During these weeks, the public is bombarded with awareness and education messaging featuring the campaign\u2019s symbol, a […]<\/p>\n","protected":false},"author":44,"featured_media":31468,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[42],"tags":[254,12716,3287,10737,268,10734,11894,4458,6400,10735,10736,12715,10731,10733,997,3154,2086,9326],"_links":{"self":[{"href":"https:\/\/www.lifeandnews.com\/articles\/wp-json\/wp\/v2\/posts\/31467"}],"collection":[{"href":"https:\/\/www.lifeandnews.com\/articles\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.lifeandnews.com\/articles\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.lifeandnews.com\/articles\/wp-json\/wp\/v2\/users\/44"}],"replies":[{"embeddable":true,"href":"https:\/\/www.lifeandnews.com\/articles\/wp-json\/wp\/v2\/comments?post=31467"}],"version-history":[{"count":2,"href":"https:\/\/www.lifeandnews.com\/articles\/wp-json\/wp\/v2\/posts\/31467\/revisions"}],"predecessor-version":[{"id":31485,"href":"https:\/\/www.lifeandnews.com\/articles\/wp-json\/wp\/v2\/posts\/31467\/revisions\/31485"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.lifeandnews.com\/articles\/wp-json\/wp\/v2\/media\/31468"}],"wp:attachment":[{"href":"https:\/\/www.lifeandnews.com\/articles\/wp-json\/wp\/v2\/media?parent=31467"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.lifeandnews.com\/articles\/wp-json\/wp\/v2\/categories?post=31467"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.lifeandnews.com\/articles\/wp-json\/wp\/v2\/tags?post=31467"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}