Diagnostic mammograms, breast ultrasounds, needle biopsies – these are just a few tests a woman may have if there is any question whether she has breast cancer. When dealing with such a scary situation, it’s important for the patient and doctor to share three things with each other: trust, respect and comfort.
Sadly, comfort is exactly what many people are missing in their relationships with their doctors. When someone feels comfortable with her doctor, it creates an environment of open communication and honesty, allowing the patient to feel empowered by information, not fearful.
I spoke with a woman named Maria who was in the emergency room after noticing changes in her breast, coupled with extreme breast pain. She had gone through the wringer, meeting with various doctors, having her blood drawn and going through tests she did not understand.
I called her back the following day to check on her and she was still in the hospital. She’d had a diagnostic mammogram, a breast ultrasound and was having blood drawn every few hours. Her doctor also mentioned doing a biopsy.
In an effort to understand, I asked about her results. “What have they told you so far?” “Why are they keeping you in the hospital?”
She couldn’t answer any of my questions. She was too scared to ask her doctor what was going on, or to question the tests she was having.
The incredibly frustrating and heartbreaking thing to me is this scenario isn’t uncommon, and it’s understandable. Things tend to move quickly when in a hospital setting. There are a lot of conversations happening and new terms being thrown around. Many people report they feel like their heads are swirling.
People worry they might appear dumb if they ask questions, or are inconveniencing a very busy doctor. Often, they are just too scared to hear the answers to their lingering questions.
As a result, we’ve seen cases where women leave their doctor’s office unaware of even the most basic information – the type or stage of breast cancer they have.
For two years I worked at the Komen breast care helpline, and it felt like I couldn’t say it enough: No matter who you are or what you are feeling or facing, you have the right to know what is happening to you. It’s OK to ask questions when you are confused, uncertain or don’t understand something. Even if you trust your doctor, you should still feel free to ask – even if the answers scare you. Being informed is one of the best ways to help ensure you’ll get good medical care.
Here are some tips from those who have been there:
To the extent you can (and this wasn’t possible for Maria in the emergency room, but was later), write down a list of questions. Such as, why is the doctor recommending this test for me?
Many people bring a friend or loved one with them to listen to the doctor and ask questions themselves. You’d be surprised how often a “buddy” hears information that the patient doesn’t, and vice versa. Compare notes later.
And if you feel like you don’t even know what to ask, don’t worry. There’s a lot of new information and jargon, and it can be hard to figure out how to get started. That’s why Komen created the “Questions to Ask Your Doctor” series, covering topics like diagnosis, treatment options, treatment side effects and many others.
After we spoke, Maria felt prepared with her list of questions, and thankful for the confidence she was given to talk open and honestly with her doctor.
That’s how I hope everyone will feel when speaking with her doctor – empowered and informed.
And if you need a little help getting there, don’t hesitate to call the Komen helpline with any questions. The number is 1-877 GO KOMEN (1-877-465-6636). Trained and caring staff are available to assist you seven days a week, from 7 a.m. – 10 p.m. ET.
**Jennifer has taken her experience working at the Komen Breast Care Helpline and is currently furthering her education in the medical field.
You know this is the time of year when we are surrounded by tons of information about breast cancer. Some good, some bad. The internet can be a huge help, but it is also filled with myths about breast cancer. And while your friends and family members have the best intentions to give you information to protect you, not everything you hear is true. Sometimes it’s hard to tell the difference between the good and the bad. Here, we tackle 10 common myths about breast cancer.
Myth: Wearing deodorant causes breast cancer
Fact: Lucky for us (and those around us), this is not true. While there have been some reports that chemicals found in deodorants and antiperspirants can enter the skin and cause changes in breast cells that could lead to cancer, the research to date does not support a link between deodorant use and breast cancer risk.
Myth: Wearing a bra causes breast cancer
Fact: Don’t worry; you can keep wearing your bra (if you want). Scientific evidence does not support a link between wearing an underwire bra (or any type of bra) and breast cancer risk. There is no biological reason why the two would be linked.
Myth: Injury or trauma to the breast, like getting hit in the breast, can cause breast cancer
Fact: While we never want to get hurt, the good news is there is no evidence to support a link between trauma or injury to the breast and the risk of breast cancer.
Myth: Having a family history of breast cancer means “I WILL” get breast cancer
Fact: A family history of certain types of cancer can increase your risk of breast cancer. However, most women with breast cancer don’t have a family history of the disease. In fact, only about 13 percent of women with breast cancer have a close relative (mother, sister or daughter) with breast cancer. Also, even if you don’t have a family history, be aware because you can still get breast cancer! In fact, most people diagnosed with breast cancer are at average risk and we don’t know which factors came together to cause the cancer.
Myth: Breast cancer always forms a lump
Fact: Most people know that a lump in the breast may be a sign of breast cancer, but there are actually seven other warning signs you need to know about! And did you know that six of the eight warning signs are visual changes that cannot be felt?
Myth: Men don’t (or can’t) get breast cancer
Fact: Men may not think of themselves as having breasts. For men, it’s their chest or their “pecs,” but the fact is men have breast tissue. So, men can get breast cancer! In 2015, about 2,350 new cases of invasive breast cancer and 440 breast cancer deaths are expected among men in the U.S.
Myth: Young women don’t get breast cancer
Fact: The truth is all women are at risk of breast cancer! Although rare, young women can get breast cancer, even in their 20s! However, fewer than five percent of all breast cancers diagnosed in the U.S. occur in women under 40.
Myth: If a woman is pregnant she can’t get breast cancer
Fact: Sadly, this is not true. Breast cancer is actually the most common cancer in pregnant and postpartum women. When women are pregnant or breastfeeding, their breasts are naturally more tender and enlarged, which may make it harder to find a lump or notice other changes.
Myth: Putting a cell phone in your bra can cause breast cancer
Fact: You can relax a bit because studies have found no increase in the risk of breast cancer or other types of cancer from cell phone use.
Myth: If I eat right, don’t smoke, exercise and don’t drink alcohol I won’t get breast cancer
Fact: A person can do everything “right” and still get breast cancer. For breast cancer, most risk factors that we have some control over, like exercising and eating healthy only have a small effect on risk. This means there is no one behavior that will prevent breast cancer.
Now that you know the truth, pass it on. Share what you’ve learned and help stop the spread of myths that can unnecessarily cause people worry and concern. Visit komen.org for current, safe and accurate breast cancer information. Or if you want to talk to someone in person, call our breast care helpline at 1-877 GO KOMEN (1-877-465-6636). A trained and caring staff member is here to assist you Monday-Friday from 9:00am -10:00pm ET. You can always count on us as a source of trusted information!
Breast cancer does not recognize age, ethnicity, socioeconomic status or gender. In honor of Hispanic Heritage Month (Sept. 15 – Oct. 15), we are honoring breast cancer survivors within the Hispanic community and all of those who has been affected by this disease. These courageous women are sharing in their own words what it means to be a survivor.
Each year, Susan G. Komen identifies the Priority Issues that will be the focus of our advocacy efforts for the coming year (read more here). But these aren’t the only issues affecting breast cancer survivors and their loved ones! In fact, here are five pieces of legislation, supported by Komen, that have been introduced thus far during the 114th Congress (current Congress) that impact the entire breast cancer community.
1. Breast Cancer Patient Education Act (H.R.2540/S.1192)
This proposed legislation directs the Department of Health and Human Services (HHS) to create an educational campaign to inform breast cancer patients who are planning to undergo surgery for treatment – especially those in racial and ethnic minority groups – about the availability of and insurance coverage for breast reconstruction, prostheses, and other options through the Women’s Health and Cancer Rights Act of 1998. While the decision to undergo breast reconstruction or use prostheses is a personal decision, all women should be made aware of their options and coverage.
2. Breast Density and Mammography Reporting Act (H.R.716/S.370)
This legislation will provide information to women and doctors on breast density and the potential impact it has on the detection of breast cancer. To understand your personal risk, it’s important to know your family’s medical history and your personal health history, and to have a discussion about breast density with your health care provider (especially if your mammogram shows you have dense breasts). Knowledge is power, and there may be additional, appropriate screening tools if you have dense breasts.
3. Cancer Drug Coverage Parity Act (H.R.2739/S.1566)
The Cancer Drug Coverage Parity Act aims to improve access to cancer treatments by requiring insurance companies to cover drugs taken by mouth and drugs taken intravenously at the same cost to patients. It should make no difference how a drug is taken and who administers it – patients should not be forced to choose a less-appropriate treatment option simply because an insurer provides less coverage for a cancer drug that happens to be administered by mouth rather than IV. Patients and their physicians should be free to make treatment decisions based on what is best for that patient.
4. Lymphedema Treatment Act (H.R.1608)
Lymphedema can be a serious side effect of breast cancer treatment. This bill will ensure coverage for prescribed compression therapy supplies, which are the cornerstone of lymphedema treatment. Inadequately treated lymphedema can lead to costly complications and even lifelong disabilities. Covering these supplies will improve patient care, while reducing the total health care costs associated with this chronic and potentially debilitating condition.
5. Patients’ Access to Treatments Act (H.R.1600)
This legislation would limit the amount patients must spend on specialty tiered medications. That means removing insurance barriers to lifesaving treatments – even as the cost of health care continues to rise. This legislation could alleviate the financial hardship that breast cancer patients may experience due to the increased cost-sharing implemented by some insurers.
Want to get updates on these pieces of legislation as well as Komen’s advocacy activities? Be sure to join us and become an advocate.
The following blog appeared in The Huffington Post on August 6, 2015.
Last month, when President Obama visited Kenya to participate in the Global Entrepreneurship Summit, he regrettably did not have the opportunity to visit the important region of southern Kenya that is home to the Maasai people and East Africa’s most iconic wilderness and the wildlife, to see firsthand how economic growth is fueled by partnerships and the entrepreneurial determination of the Maasai people.
In the 20th century, the Maasai, a tribe of traditional semi-nomadic cattle-herders, lost much of their land to the British and the Kenyan government. In recent years, the Maasai have been impacted by climate change and severe droughts. Rather than abandon their traditions and culture, 15 years ago the Maasai people of Kuku Group Ranch in southern Kenya near Mount Kilimanjaro, had a vision for how they could preserve and honor their heritage through ecotourism. They created a pioneering partnership between the eco-lodge of Campi ya Kanzi and the Maasai Wilderness Conservation Trust (MWCT) that has become a model for how conservation and community can come together to serve the wildlife, the wilderness and the Maasai people.
Enter Edward Norton.
Most of us know Edward as an exceptionally talented, Oscar-nominated actor and filmmaker. Over the past few years, I have had the opportunity to learn about another of Edward’s passions – conservation. He comes by this passion honestly – his father is an internationally renowned conservation activist – and has been committed to conservation causes for many years.
Since his first visit to the Campi ya Kanzi and MWCT in 2000, Edward has supported and served as U.S. Board President of the MWCT. His involvement spans about the same amount of time we at Susan G. Komen have worked with breast cancer programs in Kenya. Our mutual investment in the health of women in the region has had unanticipated but beneficial results. I asked Edward to join me in a conversation to share his thoughts on our unique partnership.
JUDY: Thank you for helping tell the story of how health and conservation work together.
EDWARD: MWCT works holistically with the Maasai on conservation, health, and education. The health of the community is of vital importance because we believe that successful, sustainable conservation programs work best when they come from a “people’s needs first” perspective. Meaning that people must first be healthy and thriving in order for them to be great stewards of their ecosystem.
At MWCT, our partnership with Susan G. Komen is the embodiment of successful, sustainable, holistic programs.
JUDY: As a women’s breast cancer organization, we couldn’t agree more on the wisdom of investing in health to strengthen communities. In Kenya, women are diagnosed with breast cancer at much earlier ages than African-American women — about 10 years younger. They’re often diagnosed at advanced stages of the disease. Access to information and health care is a significant problem. And we understand that women are often at the heart of the community. We’ve been funding breast cancer programs in Kenya since 2001, and gave our first grants to the Maasai Wilderness Conservation Trust four years ago, helping to underwrite the salary of a health director and a breast cancer education program. What specifically has been achieved with this support?
EDWARD: Support from Komen provided MWCT with a Health Director that serves the most rural and under-served Maasai communities in the region. The results of this investment in women’s health are truly transformative. In the process of educating women about their health to end breast cancer, the health of the entire community and its ecosystem has improved dramatically. You can see this in one incredible example where the women that attended the health outreach programs banded together to do more, to increase their empowerment and economic independence. They formed a group where, in partnership with MWCT and A New Course, the group started a seed bank that provides them with additional income while restoring the grasslands in this important ecosystem. The women are increasing their health, the health of their families, and the ecosystem. This all started with Susan G Komen’s investment. We are grateful to be a partner with Susan G. Komen.
JUDY: So it comes full circle -
EDWARD: It has truly made a difference for these women and this community. And on a programmatic level, it’s also allowed us at the Maasai Wilderness Conservation Trust to leverage the reach of a very small staff offering very rudimentary health services. Funding for the health director gave us the ability to connect with national health services, procure medications and identify equipment that we need, for example. Out of this very simple type of support, we’ve seen a lot of short- and long-term change, all for the better.
JUDY: That long-term change, the long-term sustainability of programs like these, is key. Komen works in 30 countries worldwide, in partnerships like these, always with an eye toward sharing what we know and helping to build programs that can be sustained locally for a very long time.
EDWARD – And it’s a model for other innovations that MWCT is working on, like a carbon credit brokerage and solar conservancies. We work best when we can bring together the macro resources and expertise of global organizations like Komen, with local people who are working to improve their lives.
JUDY – Edward, it’s very rewarding to be working with organizations like the Maasai Wilderness Conservation Trust and with advocates like you who are making a difference. Thank you for your dedication.
EDWARD – And thank you, Judy and Komen, for helping to jumpstart real progress in the lives
of the Maasai women.