Myths & Truths

FALSE. The evidence actually shows that breast self-exam (BSE) does not save lives or detect breast cancer at an earlier stage.

For decades, women age 20 and older have studied shower cards, read pamphlets, watched videos and prodded silicon breast models to find a hidden lump – each resource teaching BSE as a life-saving personal responsibility. Seems to make sense. In reality, there is no scientific evidence to prove this is true. In fact, the studies that have been done show an increase in potential harm from monthly, regimented BSE including elevated anxiety, more frequent physician visits and unnecessary biopsies of benign lumps.

Many organizations share NBCC’s viewpoint on BSE. The National Cancer Institute (NCI) no longer prints a BSE guide; the U.S. Preventive Services Task Force recommends against health care providers teaching breast self-examination; and the American Cancer Society is phasing out materials that focus only on breast self-exam.

FALSE. What’s the risk? False positive results may lead to unnecessary, intrusive surgical interventions, while false negative results will not find cancerous tumors.

This myth is about screening mammography programs—that’s mammograms for healthy women who do not have any symptoms. There also are diagnostic mammograms—those that are given when there is a problem. More than 80 percent of women who receive suspicious results from a screening mammogram do not have breast cancer.

The American Cancer Society recommends annual screening mammograms, those performed without symptoms present, starting at age 40. But evidence shows that in the United States, it has been estimated that a woman’s cumulative risk for a false-positive result after ten mammograms is almost 50 percent; the risk of undergoing an unnecessary biopsy is almost 20 percent. In addition, women who are screened with mammography often have more aggressive and unneeded treatments. It is estimated that mammography screening has increased the number of mastectomies by 20 percent and the number of mastectomies and lumpectomies combined by 30 percent.

Women are regularly told that screening mammograms save lives. Evidence of actual mortality reduction is, in fact, conflicting and continues to be questioned by scientists, policy makers and members of the public. Since evidence does not currently significantly support, nor disprove the effectiveness of this test, receiving a screening mammogram should be a personal choice, not a medical mandate.

FALSE. MRI is a more sensitive test but it also leads to signficantly more false positive results.

There is currently no evidence to show that MRI used for routine breast cancer screening saves lives. MRI works differently than mammography and some might consider it “better” because it is unaffected by breast density and does not use radiation.

However, when used for screening, MRI yields even more false positive results than mammography. This is one reason why the use of MRI screening is not recommended for the general public. Even among those at high-risk for developing breast cancer, one study of women with genetic predisposition found that the number of unneeded biopsies tripled. Current studies are looking at the impact of using MRI alone or in combination with mammography for screening high risk women, but it will be many years before we know if the technology saves lives.

As with any screening tool, the potential risks and benefits need to be carefully considered.

TRUE. What is early detection? We probably think of it as early enough to intervene and save a life. But there are different kinds of breast cancer. For some of them, if they are surgically removed, the breast cancer has been effectively “cured.” For others, it can be found really early, yet no known intervention will “cure” it. Complicated? Yes. But the truth about breast cancer is just that.

NBCC embraces a philosophy of evidence-based health care, and has long raised questions about the value of mammography screening and other tests. This is important because patients need to be assured about the value of all medical interventions, and public health resources need to be used with certainty about value to the public’s health.

NBCC believes that in order to make true progress in breast cancer we need to better understand what causes this disease, what puts individual women at risk beyond the known risk factors, how different types of breast cancer behave, and which treatments are appropriate and effective for each type of breast cancer to ensure that women receive quality care.

Learn more about NBCC’s History of shaping the world of breast cancer and our top priority of guaranteeing quality care for all.

TRUE. Breast cancer death rates changed little between 1930 and 1990, but decreased 27% from 1990 to 2005.

Between 1994 and 2003, the mortality rate for women of all races combined declined by 2.4% annually. In white women, breast cancer mortality declined by 2.5% annually. In black women, mortality declined by 1.4% annually during the same period. Some good news, but remember there are still 40,000 women who will die of breast cancer this year.

While these statistics are encouraging — we don’t actually know why mortality rates decreased. We need more research to figure out what factors led to the reduction in death from breast cancer so that we may continue the downward trend — and we need to make certain it’s the same for all women. We must continue pushing to find out what causes this disease.

Learn more about how you can be a part of NBCC’s mission to end breast cancer.

FALSE. Mammography is a screening test to detect cancer already present in the breast. It does not prevent cancer, nor will it definitively detect the disease.

The bottom line is mammography does not prevent breast cancer. Continuing with mammography screening is a personal choice, but it does not determine what causes breast cancer, nor will it cure the disease. Ultimately, resources must be devoted to finding effective preventions and treatments for breast cancer and tools that truly detect breast cancer at a time where an intervention will help.

Learn more about programs that make a difference and how NBCC’s involvement in one such program, the Department of Defense Breast Cancer Research Program, shapes breast cancer research and pushes for consumer advocates in all decision making. Become a member of NBCC today and see how you can personally join our mission.

TRUE. There are factors associated with increasing risk of breast cancer and certain factors that decrease the risk of breast cancer, but we do not know how to prevent breast cancer.

Don’t eat red meat. Eat a low fat diet. Don’t wear deodorant. Don’t sleep in a bra. Women are bombarded constantly on what they can do to prevent breast cancer. Unfortunately, at this time, there is no known way to prevent the disease. Current factors known to contribute to overall breast cancer risk are mostly uncontrollable, including age, personal and family breast cancer history, certain genetic factors, first menstrual period before age 12, menopause after 55, breast density and race. A few factors that can be controlled that have shown increased risk include obesity, alcohol consumption and lack of physical activity.

It is important to keep in mind that most women who have known risk factors do not get breast cancer. Also, most women with breast cancer do not have a family history of the disease. Except for growing older and certain genetic factors, most women with breast cancer have no clear risk factors. We can’t tell any individual woman, “Do this or take this and you won’t get breast cancer.”

We must find out what causes breast cancer so we can end this disease. Learn more about the science of breast cancer through the Center for NBCC Advocacy Training and Project LEAD^® courses.

FALSE. More than 75% of women with breast cancer have no family history of the disease and less than 10% have a known gene mutation that increases risk.

If you have relatives who have had breast cancer, you may worry that you’re next. Family history of breast cancer usually refers to having two or more first-degree relatives (such as a mother, sister, or daughter) or second-degree relatives (such as an aunt, niece or grandmother) who have had breast cancer. The risk for developing breast cancer does increase with increasing numbers of affected first-degree relatives compared with women who have no affected relatives. So, while it is true that women with a family history of breast cancer have an increased risk of developing the disease, most of these women will never get breast cancer.

We have discovered that among some women with a significant family history, certain inherited mutations of the genes BRCA 1 and BRCA 2 may result in increased risk of breast cancer. The mutations are sometimes (but not always) passed down to relatives. Even if you have a family history, it does not mean you have an inherited mutation.

BRCA 1 and BRCA 2 mutations are found in about 5-10 percent of all breast cancer cases. Having the mutation does not mean you will automatically get breast cancer; it means you are at higher risk. And remember that 90-95 percent of breast cancer cases do not involve these inherited mutations.

A family history is one risk factor. But a risk factor doesn’t cause cancer, it just affects your chance of getting cancer. Other risk factors for breast cancer include getting older, benign breast problems, early exposure to ionizing radiation, having children late in life or not at all, longer exposure to estrogen and progesterone, lack of exercise, and drinking alcohol.

We know a little about breast cancer risk factors, but why some women develop breast cancer and others do not, is still often a mystery.

FALSE. It is estimated that in 2010, 1,970 cases of breast cancer will be diagnosed in men.

While less than 1% of new breast cancer diagnoses occur among men, it is still a possibility for men to develop the disease. Of the approximate 40,230 deaths from breast cancer this year, an estimated 390 of them will be men. For males, the lifetime risk of getting breast cancer is about 1/10th of 1%.

Although the odds are not overwhelming for men, it is important to focus on what causes this disease and join the mission to end breast cancer.

TRUE. Breast cancer is primarily a disease of older women, with the median age of diagnosis at 61 years of age.

It is estimated that a woman age 20 has about a 5 in 10,000 risk of developing breast cancer in the next 10 years; for a woman age 40, it is about 1 in 100, and for a woman age 60, it is about 1 in 28.

A 20-year old woman has a lower risk of dying from breast cancer than a 70-year old man.

TRUE. Assuming a group of 100 women live until the age of 90, about 12 may develop breast cancer in their lifetime.

Overall, a women’s lifetime risk of developing cancer is about 1 in 8, however, according to some surveys and studies, many women mistakenly believe that they have a 1 in 8 risk every year.

FALSE. There are many sub-types of breast cancer and they require different types of treatment.

Different women have different breast cancer types with unique disease characteristics including:

• The stage
• The size and grade of the tumor
• If there is lymph node involvement [nodal status]
• Hormone receptor positive or negative
• Her2/neu positive or negative

We also know that there are inherited gene mutations that affect breast cancer, such as BRCA 1 and BRCA2 mutations.

Breast cancer treatments have evolved over the years with the development of a range of chemotherapy drugs and therapies that target specific types of known breast cancers. About 25 percent of women with breast cancer are found to overexpress a protein called Her2. Trastuzumab (Herceptin) is a targeted therapy for women with Her 2 positive breast cancer. In addition, nearly four out of five women with breast cancer have hormone receptor (HR) positive cancer, also called estrogen receptor (ER) and/or progesterone receptor (PR) positive. Hormonal therapies may keep these types of cancers from growing, increasing survival and reducing recurrence.

Triple-negative breast cancer is another subtype of breast cancer (called triple negative because it lacks the receptors for estrogen and progesterone, and has normal levels of HER2).

It is important to recognize that just like any other diagnosis, knowing the specific kind of breast cancer one has is important to finding the best treatment.

FALSE. While women with a positive BRCA test have a much higher chance of breast cancer, it does not guarantee the development of the disease.

About 12 percent of women in the general population will develop breast cancer sometime during their lifetime. For women who have inherited a harmful mutation in BRCA1 or BRCA2, that number is much higher. There is a lot of controversy about the exact rate, but it appears to be up to 5 times higher than for women without the mutation.

A positive test result generally indicates that a person has inherited a known mutation in the BRCA1 or BRCA2 gene and has an increased risk of developing certain cancers. However, a positive test result provides information only about a person’s risk of developing cancer. It cannot tell whether an individual will actually develop cancer or when. A couple different health management options are typically offered to those with a positive BRCA test. These options include more frequent screening tests, surgery (prophylactic mastectomy), or drugs (“chemoprevention”) to reduce the risk of breast cancer. However, there is no strong eveidence that any of these options actually reduce the number of deaths from breast cancer. Women with a BRCA gene mutation must carefully weigh the benefits and risks of these health management options.

Conversely, testing negative for the gene does not mean one will never develop breast cancer—90-95% percent of women who develop breast cancer do not have a BRCA inherited gene mutation.

Learn more about BRCA 1 and BRCA 2 genetic testing and health management options for those testing positive. Become a member of NBCC today to join the mission to end breast cancer.

TRUE. White women are more likely to receive a diagnosis of breast cancer, but African American women have a higher mortality rate.

The incidence rate of breast cancer for African American women is about 118 per 100,000 women compared to 128 per 100,000 for white women. The mortality rate for breast cancer for African American women is about 33 per 100,000 women compared to 24 per 100,000 white women. (Among Hispanic women, the incidence rate is 88 per 100,000 women and the mortality rate is 16 per 100,000 women.)

One reason for the difference in mortality among African American women may be that young African American women are disproportionately affected by triple-negative breast cancer. There is no targeted treatment for this subtype. It lacks the receptors for estrogen, progesterone and human epidermal growth factor receptor 2 (HER2) and cannot be controlled with drugs such as tamoxifen or trastuzumab that target these receptors. There are fewer effective treatment options for these patients, however it appears that chemotherapy may be more effective in this type of breast cancer.

Find out more about the statistics of breast cancer and what you can do to get involved in important work to end this disease. Explore scientific education courses and advocacy that will make a difference.

FALSE. Completely removing the breast—known as mastectomy—is usually not more effective than just taking out the cancer—known as lumpectomy. There are issues with both treatments, and patients need to be informed to make the right decision for them.

It may seem logical that if breast cancer is found, removing the breast is more likely to be a lifesaving treatment. Clinical trials have shown, however, that mastectomy and lumpectomy with radiation have the same result for mortality in most instances. Once you know the pros and cons for each treatment for your type of breast cancer and your situation, the choice is a personal one. If a doctor recommends one instead of the other, ask why and educate yourself on the evidence.

FALSE. For women who have a high risk of breast cancer, there are drugs that may help reduce their risk but they have significant side effects. There are no drugs, however, that will definitively prevent breast cancer.

So-called “chemoprevention” drugs are given to healthy women, not to treat breast cancer, but to reduce the risk of ever developing it. Chemoprevention drugs sound exciting. Who wouldn’t want a drug that could ward off breast cancer? But given the many unanswered questions and some serious side effects, the potential harms may outweigh the potential benefits. And the research has been on high-risk women only, so we don’t know anything about how these drugs would impact most women. Among many other things, we don’t know if the reduction in risk is short term or if the drugs reduce the risk of dying from breast cancer.

There are special challenges to giving risk reduction drugs to healthy women. Most women will never get breast cancer, whether they take the drug or not. So only a small proportion of women taking the drug will benefit, while many others will be unnecessarily exposed to side effects and other known—and unknown—harms.

FALSE. It is normal to feel a treatment decision must be made right away, but taking time to decide on an appropriate course of action may be time very well spent.

A breast cancer diagnosis is terrifying, and new patients often scramble to start treatment immediately. But there’s no evidence that taking some time to learn about the diagnosis and to select the right health care providers will adversely affect the outcome. There is a lot to learn—the details of the diagnosis, surgery options, drug dosing and scheduling, possible side effects, etc. Second opinions can be extremely valuable. There is enough time for you to gather the information you need to make an informed decision.

Learn more about the science of breast cancer research, diagnosis, treatment and quality care at Breast Cancer Information.

FALSE. While you definitely should get a second opinion on how to treat your breast cancer, that is not enough. Know that all breast cancers are not the same and cannot be treated as such. Breast cancer is a complex disease with many variants needing different treatments.

Ask a second pathologist to determine your specific diagnosis. A pathology second opinion can help you be more certain that your diagnosis and disease characteristics are correct. This is very important because doctors base their treatment advice on your pathology report.

Treatment options vary depending on the specific diagnosis you have. And that diagnosis is explained on the pathology report. If a woman is diagnosed with a Stage I cancer, she most likely will not need the same course of treatment as someone diagnosed with Stage IV. Even if the stage is the same, treatments will vary for breast cancer sub-types, such as estrogen-receptor positive or HER-2 positive breast cancer. Since treatment choices depend on having a complete and accurate diagnosis, it is important for patients to know they can get a second opinion on the diagnosis itself.

To learn more, explore Breast Cancer Information for scientific and health care information in plain language.

TRUE. According to the Women’s Health Initiative (WHI) Postmenopausal Hormone Therapy Trials—an estrogen-plus-progestin replacement therapy—increases the risk of breast cancer, along with heart disease, stroke and blood clots.

The WHI clinical trials, launched in 1991, studied a group of 161,808 generally healthy postmenopausal women for the effects of HRT, diet modification and calcium and vitamin D supplement use on heart disease, fractures as well as breast and colorectal cancer. Results from the trial on HRT, published in 2002, found that while the estrogen-only replacement therapy did not increase breast cancer risk, the risks far outweighed the benefits in the estrogen-plus-progestin study. Overall, there was a 24% increase in the risk for breast cancer due to estrogen-plus-progestin.

FALSE. We still do not know how to cure breast cancer. We do have more treatment options and more targeted therapy, but we don’t understand the disease well enough to know for certain which cancers will come back and/or spread, and which cancers will not.

Many breast cancer survivors are now celebrating 10, 20, 30 or more years of being “cancer-free,” which is certainly a cause for celebration. Breast cancer mortality rates have actually decreased 27 percent from 1990 to 2005. Although no one knows the exact cause of the decrease, many attribute it to the introduction of better treatments.

But until we better understand the biology and progression of the disease, being “cancer-free” is not the same thing as being cured. And we cannot tell any individual woman at the end of her treatment that she is “cured.” We just do not know. It’s hard to look at the disease in this way—it seems pessimistic. But creating a false sense that we already have a “cure” is simply misleading.

If you don’t like this current truth, take action to change it. Learn more about important grassroots advocacy work that makes strides toward creating a future without breast cancer.

TRUE. Informed decision making is an important part of quality care. Patients should feel comfortable questioning and challenging and participating in their care decisions.

Some patients are still more comfortable letting the doctor be the sole decision-maker in their treatment plan, and do not choose to have greater involvement in their treatment choices. However, many patients do want a role in deciding their treatment plan and personally weighing the potential risks and benefits of each treatment option against their preferences and values. Patients should have access to readily available, unbiased, evidence-based and understandable information and facts about their condition.

NBCC’s website is an online resource that equips individuals with more information for the decision-making process. Learn more about treatment rationales, levels of scientific and clinical evidence, the magnitude of demonstrated benefits and harms, descriptions of known side effects, and important unresolved issues and controversies related to various interventions at Breast Cancer Information. If you want to understand evidence at a deeper level, consider taking Project LEAD^® or other courses offered by the Center for NBCC Advocacy Training.

FALSE. Advocates can become educated and able to understand and influence breast cancer research. Their perspective is key to finding answers.

There was a time when patients and advocates were not included in the analysis of scientific research, clinical trials design and treatment options. That’s right—those personally and directly affected by decisions did not have a voice. Since its inception in 1991, NBCC has worked tirelessly to ensure that patient advocates are not only included in the process, but knowledgeable, contributing participants.

Project LEAD^® is NBCC’s innovative science training program that provides a foundation of scientific knowledge upon which participants can strengthen and empower themselves as activists. Graduates of NBCC’s Project LEAD^® workshop and other courses are equipped to better explain basic breast cancer science and research information to their colleagues, clients, friends and family. As critical thinkers of the breast cancer science that appears in the news every day, these advocates serve as a resource to their organizations, clients, community and constituency that they represent.

Learn how you can become an informed advocate at the Center for NBCC Advocacy Training.

TRUE. The federal government funds a significant portion of research for many types of cancer.

In 1992, NBCC launched its 300 Million More campaign to increase federal funding for breast cancer. It was a success, and in 1993 federal appropriations for breast cancer research rose to more than $400 million. The National Cancer Institute funding went from $100 million to $225 million, and $210 million of defense funding went to begin the Department of Defense Peer Reviewed Breast Cancer Research Program (DOD BCRP), all due to NBCC’s campaign.

Why is the Department of Defense funding breast cancer research? Learn more about the program’s creation, unique features and demonstrated success. In response to NBCC’s advocacy, Congress has approved more than $2 billion in funding since the program began in 1993.

In addition, the National Institutes of Health has provided significant funding for breast cancer research for decades. Since 2001, NIH has spent roughly a half-billion dollars each year on breast cancer research.

Read more about the DOD BCRP and how your tax dollars make a difference in funding quality research.

FALSE. Breast cancer is a political issue. Congress and the Administration make important funding and policy decisions in breast cancer detection, prevention, treatment, and care.

The government is the only body with access to the amount of money needed to perform the appropriate breast cancer research, and explore cause and effect relationships that could lead to breast cancer prevention and a cure. Sustained and significant involvement on the federal level is the only way to end breast cancer.

Elected officials also have the power to change systems of access to care and treatment, including the reform of the health care system, regulation of the drug approval process and public health campaigns and access to new drugs. This is why, since our founding, NBCC has addressed breast cancer as a political issue.

Make sure your members of Congress know where you stand in the mission to end breast cancer.

FALSE. Breast cancer is a complex disease with complex treatments. It is often difficult to capture all essential pieces of information in a short news segment or article.

Coming up on the five o’clock news: scientists have discovered a cure for breast cancer. Up next at 11 o’clock: the new breast cancer causing agent that might be lurking in your kitchen cabinets. Television programs and newspaper articles frequently report on the latest study in breast cancer causes, treatments and cures—each announcing the latest breakthrough, or caution, of the disease. While many of these stories are correct and others may contain some correct information, that is not always the case. And they don’t always portray an accurate picture of the state of the disease.

The media often gravitate toward stories that are extremely hopeful, or extremely fearful. However, the truth often falls within the middle ground, and in the small details. Breast cancer is a complex issue that can’t be summarized into sound bites. As a result, the media sometimes gets the story right, but not always.

FALSE. Not all breast cancer research is created equal. Science can be complex and research must be well designed and rigorous. No matter what kind of research. But it is not just about research design. If research focuses on issues that ultimately will not help people, it doesn’t matter how scientifically sound the research is.

It seems hard to believe that breast cancer research is not always valuable. But the truth is, poorly designed research—including clinical trials—provide no meaningful information, and can actually be harmful because the results can be very misleading. On the other hand, the most elegant study in the world can only answer the questions it was designed to answer. A small and limited research question will inevitably produce a small and limited answer.

There are many potential breast cancer research topics. The scientific community alone should not prioritize research based on what’s most important to them. What’s important to patients has to be a main component. That’s why breast cancer advocates need to be involved in all levels of the research process. NBCC trains breast cancer advocates so they can help shape the future of breast cancer research.

Learn more about NBCC’s Research Initiative.

FALSE. Breast cancer survivors who have been trained and educated have both the first-hand patient knowledge, as well as the ability to advocate on behalf of others, that is an important check and balance in determining research funding.

Why exclude those that have intimate knowledge of the very important quality of life issues and treatment options of the disease? Consumers who have been trained to understand the research process add a crucial element to all panels where breast cancer decisions are made—a reality check.

The Center for NBCC Advocacy Training educates breast cancer advocates so that they can effectively sit at decision making tables. These trained consumers understand that it’s not about any one person’s breast cancer, but about changing the systems that affect all of us.

Make sure educated and trained patients and advocates always have a voice in determining that the right kind of research gets the appropriate amount of funding. Learn how to be an effective advocate today.

TRUE. While clinical trials are among the most important type of study to determine how best to prevent and treat breast cancer, under 3% of adult cancer patients take part.

Because we do not know how to prevent, cure, or best treat breast cancer, we need clinical trials to help find the answers. The Clinical Trials Initiative, launched in 1996, addresses all three of NBCC’s goals—research, access and influence. Through this Initiative, NBCC pushes for more clinical trials and quality of their design; ease of access to quality clinical trials and thus treatment and care; and advocate involvement in all phases of design, implementation and oversight. NBCC aims to clear the confusion and mystery around clinical trials to encourage more participants to take part in and, in turn, contribute to the mission to end breast cancer.

Learn more about NBCC’s criteria to evaluate quality clinical trials and the breast cancer science courses available through the Center for NBCC Advocacy Training that will teach how to best understand research and advocacy.

TRUE. Learning about breast cancer science and legislation is well within your reach.

You don’t have to accept oversimplified or sensational media reports or health care information about breast cancer. You have the option to take control of your education to learn the latest in breast cancer research, care and clinical trials and what Congress, the White House and the States are doing about these issues.

NBCC offers a suite of top-notch science and advocacy education courses through the Center for NBCC Advocacy Training. New to advocacy? Select an introductory program such as Project LEAD^®Workshop. Want to take your already solid knowledge to the next level? Experience the Project LEAD^®Institute, or one of our other more advanced programs.

TRUE. When you speak, members of Congress listen. Adding your voice to thousands of other breast cancer advocates ensures the message is clear—we want an end to breast cancer now.

For nearly 20 years, NBCC has worked to amplify voices of those determined to end this disease. By lobbying Congress for research funding and access to care, by challenging drug companies and the medical community on treatment standards, and by training survivors and allies to take their rightful place at the decision-making table, NBCC has made certain that breast cancer remains at the forefront of the scientific, healthcare and legislative agendas. Continued advocacy is the only way to ensure this issue remains a top priority.

TRUE. No matter what your role—advocate, educated patient, supporter of a loved one, or informed consumer of news and research—you can use your knowledge and your voice in the mission to end breast cancer.

NBCC envisions a world where our organization doesn’t exist. That’s right. Our goal is to close our doors forever. Not a business plan you hear too often. NBCC works everyday to create a world where no one, directly or indirectly, has to worry about a diagnosis, undergo treatment, or lose a special person to breast cancer. We’ve made important strides, but we haven’t yet figured out how to prevent or cure the disease and we’re a long way from eradicating it.