breast cancer awareness

Not so long ago, breast cancer was a subject unfit for polite conversation. Women were expected to deal with the disease in silence. Things started to change in the mid-’70s, when a few high-profile women decided to speak publicly about their breast cancer. These pioneers paved the way for support groups and public sharing of important health information.

Since then, breast cancer awareness has become a pink juggernaut. Billions of dollars have been raised for education, research, and advocacy. The awareness campaign is a phenomenal success. But what progress have we really made — and where do we go from here?

Breast Cancer Awareness Then and Now

When journalist Betty Rollin wrote the memoir about breast cancer “First, You Cry,” the response wasn’t always kind. The year was 1976. There was no breast cancer awareness campaign. No pink ribbons. Breast cancer, mastectomy, and sexuality after breast cancer were strictly taboo.

Today, breast cancer, and all that goes with it, is discussed openly. We have access to information and support systems. And we have the breast cancer awareness campaign to thank.

 Breast Cancer Awareness Timeline
1974First lady Betty Ford breaks the silence surrounding breast cancer and announces she had a mastectomy.
1976The American Cancer Society (ACS) recommends monthly self-exams beginning in high school and periodic clinical breast exams after age 20. For the first time, yearly mammograms are recommended for all healthy women over age 50.*

“First, You Cry,” a breast cancer memoir by journalist Betty Rollin is published. While some applaud her honesty, others are appalled by her disclosures.
1980ACS recommends baseline mammogram for all healthy women aged 35-39.
1982Breast cancer organization Susan G. Komen is formed.
1983The first Susan G. Komen Race for the Cure is held in Dallas, Texas. There are 800 participants.

ACS recommends mammograms every 1-2 years for healthy women aged 40-49.
1985National Breast Cancer Awareness Month debuts in October.
1991Pink ribbons are distributed at the Komen New York City Race for the Cure.
1992Pink ribbons are distributed in association with breast cancer awareness month.
1997ACS recommends yearly mammograms for all healthy women over age 40.
2000More than 1 million people participate in Komen Race for the Cure series.
2002Think Before You Pink launches in response to concerns about “pink ribbon marketing.”
2003ACS declares breast self-exams optional for women of every age.
2009The United States Preventive Services Task Force (USPSTF) announces changing guidelines for mammography. It no longer recommends routine screening for women aged 40-49. The ACS continues to recommend screenings starting at age 40.
2013Study published in the journal Cancer says women aged 40-49 should have screening mammograms.

The New York Times runs an op-ed by Angelina Jolie. The actress explains her decision to have a preventive double mastectomy due to an inherited genetic mutation. The article inspires new interest in genetic testing. It also ignites fierce debate about the merits of preventive mastectomy and personal choice.
2014Pancreatic Cancer Action inadvertently creates controversy by launching, “I’d rather have breast cancer” ad to draw attention to the low survival rate of pancreatic cancer.

*These ACS recommendations are for healthy women. Guidelines vary for women who have had or are at higher risk for breast cancer.

As the awareness campaign gained momentum, the “pinking” of October continued.

Critics argue that breast cancer gets more attention than other diseases that cause more deaths. Advocacy groups are scrutinizing companies that use breast cancer awareness in product marketing. “Pink fatigue” became a thing. Awareness now includes advice to “think before you pink.”

Breast Cancer Spending: Where Does the Money Go?

Fundraising events take place all year long, but reach epic proportions in October. Individual donations range from pennies to millions of dollars. So, where does the money go?

According to Susan G. Komen, the federal government spent $30 million on breast cancer research, treatment, and prevention in 1982. It now spends over $850 million per year.

The National Cancer Institute (NCI) is part of the National Institutes of Health (NIH) and the Department of Health and Human Services (HHS). NCI receives congressional funding for cancer research of all types, including breast cancer.

 NCI Spending for Breast Cancer Research (in millions)*
2011$625.1
2012$602.7
2013$559.2

*NCI

Thousands of organizations are dedicated to the cause. According to Breast Cancer Facts and Figures 2013-2014, the ACS spends more on breast cancer research than any other type of cancer. Between 1971 and 2010, ACS awarded about $450.7 million for breast cancer research and training grants. Since 2011, ACS has awarded $46.4 million. The organization is currently funding $86 million in breast cancer research.

Susan G. Komen has funded over $800 million in research since 1982. The nonprofit has also funded more than $1.7 billion for screening, education, treatment, and psychosocial support. In 2013, Komen was funding $300 million to 500 active research projects.

 Susan G. Komen Fiscal Spending 2013*
38%Education
20%Screening
18%Research
11%Fundraising
7%Treatment
6%Administrative

*Susan G. Komen

The Breast Cancer Research Foundation (BCRF) invested $58.6 million for research in 2014. Since it was founded in 1993, BCRF has raised more than $510 million.

 Breast Cancer Research Foundation Spending 2014*
87%Research
6%Fundraising
4%Awareness
3%Administrative

*BCRF

According to its 2013 Topline Financial Summary, the Avon Foundation for Women allocated 63 percent of its breast cancer grant support to access to care programs. It allocated 37 percent to research. Approved grant commitments for various causes included $20.1 million for breast cancer. Since 1992, the foundation has granted more than $815 million to breast cancer programs around the world.

The National Breast Cancer Coalition (NBCC) has put over $2.77 billion dollars into research since it was founded in 1991. The nonprofit spent $5,107,049 in 2012.

 NBCC Spending 2012
34% Education and Training
14%Public Information, Education, and Outreach
13%Fundraising
13% Catalytic Research and Collaborations
12% Public Policy
7% Management and General
6% Grassroots Advocacy Field Network Development and Support
1% Other Programs

*NBCC

When it comes to product marketing, it’s not always easy to figure out where the money goes. You’re better off making a direct contribution to the organization of your choice. It’s a good idea to look at the organization’s financials to see where your money will go. In some cases, you choose which programs your money goes towards.

Breast Cancer Incidence and Mortality Through the Years

According to the NCI’s Surveillance, Epidemiology, and End Results Program (SEER), rates for new breast cancer cases have been stable over the last 10 years. The percentage of women who survive five years has risen.

5-Year Relative Survival Rate for Breast Cancer*

19751980198519901994199820022006
75.2%74.9%78.4%84.6%86.5%89.5%90.3%90.6%

*SEER

Death rates fell about 1.9 percent each year from 2002 to 2011. A staple of breast cancer awareness is that early diagnosis and treatment saves lives. The following chart shows survival rate by stage.

5-Year Relative Survival Rate for Breast Cancer by Stage*

Localized
(61% of cases)
Regional
(32% of cases)
Distant
(5% of cases)
Unstaged
(2% of cases)
98.5%84.6%25%49.8%

*SEER

Are We Making a Difference?

There’s no doubt we’re more informed. We’ve learned that there are some things we can do to lower risk. Numerous studies have uncovered the role of diet, exercise, and other lifestyle factors in the development of breast cancer. And the stigma has effectively been removed.

Survival Rates

The ACS reports that death rates for breast cancer have declined due to earlier detection and treatment, as well as lower incidence. In 2002, there was a 7 percent decrease in breast cancer cases. That may be due to a decrease in hormone therapy (HT) for women going through menopause. That shift followed the 2002 Women’s Health Initiative, a study linking HT to breast cancer risk. It’s one example of how research impacts breast cancer rates.

Treatment

When it comes to early detection, mortality isn’t the only important factor. Cancer treatment itself can be harsh, and can lead to other health problems. Treating cancer before it spreads is usually easier on the patient. Quality of life after diagnosis matters.

We can thank research for the development of newer drugs to treat breast cancer. One example is tamoxifen. It was first approved for advanced breast cancer in 1977. Since then, it has become widely used in treating all stages of breast cancer. Though it’s important to note that tamoxifen is not useful for all types of breast cancer.

Besides the national organizations, a multitude of local organizations lend support and help patients navigate treatment.

Testing

Research has uncovered a link between mutated BRCA1 and BRCA2 genes and breast cancer risk. Today, genetic testing can tell us if we carry this genetic susceptibility.

Who should get a mammogram and when remains a controversial topic. Changing guidelines cause confusion. There are valid concerns about false negatives, false positives, and fears about radiation exposure.

A 25-year follow-up study published in the British Medical Journal concluded that mammography in women between the ages of 40 and 59 doesn’t reduce mortality from breast cancer more than physical examination or “usual care.”

The Canadian study also found that 22 percent of mammography-detected breast cancers were over-diagnosed. That means the cancer may have never become apparent without mammography. Unfortunately, there’s no way to identify those cases at diagnosis. This avenue of research could save patients from unnecessary and expensive treatment.

The ACS still recommends screening tests and exams so breast cancer can be diagnosed and treated before it spreads. According to the NCI, early detection by mammography can help reduce breast cancer deaths among women aged 40 to 74. NCI also notes that studies have not shown a benefit for women under age 40, or from baseline mammograms.

Other Side Effects of Awareness

While the success of the breast cancer awareness campaign is undeniable, an unfortunate byproduct of that is fear. Women tend to overestimate their chances of developing breast cancer. They also overestimate the need for aggressive treatments for early stage breast cancer. Powerful images of women as “warriors” successfully “battling” breast cancer may give patients a false sense of security about treatment success rates.

Despite increased general awareness, we’re still fuzzy on details. For instance, many people don’t realize that breast cancer is not a single disease, but a group of diseases. That means some types have targeted treatments and better survival rates than other types. We’re also inclined to believe the percentage of genetically linked cases is much higher than it is.

Awareness doesn’t always translate into access to preventive services or treatment. Though great strides have been made, economic barriers and racial disparities remain. Advocacy groups continue to press for access to services for the uninsured and underinsured. With the implementation of the Affordable Care Act, all new health insurance plans must cover preventive services — including mammograms — at no cost to patients. Much work remains to be done in underdeveloped nations.

The Bottom Line

Despite advances in detection and treatment, the cure remains elusive. The NBCC has set a deadline to eradicate breast cancer by January 1, 2020. By that date, the goal is to understand how to prevent breast cancer and how to prevent deaths due to breast cancer.

Surprising Facts About Breast Cancer Awareness and Research

  • Less than 15 percent of women with breast cancer have a family member with it. Only about 5-10 percent of breast cancer cases are caused by inherited genetic mutations (including BRCA1 and BRCA1 genes).
  • In the United States, more women die of lung cancer and heart disease.
  • A woman’s chance of developing breast cancer in the United States was 1 in 11 in 1975. Today it’s 1 in 8.
  • Screening and early detection may be distorting survival rates. We’re diagnosing more women earlier. However, many of them would not have died of breast cancer, even without screening.
  • Metastatic breast cancer accounts for 90 percent of breast cancer deaths. The NCI doesn’t track the incidence of recurrent breast cancer. Neither does the World Health Organization.