Women are more likely to die from breast cancer in Louisiana than they are in other states, while young black women in the state suffer disproportionatey from the disease. Two programs, financed by the Centers for Disease Control and Prevention (CDC) and housed at the LSU School of Public Health, are working to help combat the disease and support the women affected.
No-Cost Mammograms and Pap Tests for Louisiana Women Who Qualify
The Louisiana Breast and Cervical Health Program (LBCHP) performs no-cost breast and cervical cancer screenings (including mammograms and Pap tests) for low-income, uninsured and underinsured women across the state. Louisiana has the second highest breast cancer death rate in the United States, in spite of having a lower average incidence rate, with most of those deaths attributed to a lack of health care access and screenings. There is a program like LBCHP in all 50 states, as well as the District of Columbia, five U.S. territories and 11 tribal organizations, as mandated by Congress in the Breast and Cervical Cancer Mortality Prevention Act of 1990. In Louisiana, LBCHP currently reaches approximately 14 percent of the eligible population.
SurviveDAT Offers Support for Young Survivors
Breast cancer is somewhat rare under the age of 45, but it does happen and it happens more in the South. Any woman can be diagnosed with breast cancer at a younger age, but for reasons unknown, young black women are more likely to develop the disease at those younger ages, which skews the numbers of people affected in the southern United States.
These young women often face issues that do not affect older women with the disease, including often more aggressive types of the disease, fertility decisions (which should be addressed before starting treatment), genetic factors (affecting male family members too), relationship concerns with partners and children, career implications, financial considerations and more.
To address those and improve the quality of life for these women, SurviveDAT, an in-person and online support group was established in south Louisiana three years ago. It proved so successful, SurviveDAT has now expanded its online advice and support capabilities to north Louisiana and leads the Gulf States Young Breast Cancer Survivor Network, which provides the same types of resources in Mississippi and Alabama.
Going online in the form of websites and social media makes sense in the Gulf States, as much of Louisiana, Mississippi and Alabama are rural and many women are unable to travel to in-person support groups. In contrast, they do have digital access, with young women, especially African-Americans, using social media platforms and owning smartphones at high rates. SurviveDAT now enables these women to find everything from health advice and the latest news on breast cancer to where they may find a makeup artist skilled in recreating eyebrows. To learn more, go to www.survivedat.org. To donate, go to https://give.lsuhealthfoundation.org/survivedat.
What Every Woman Needs To Know
Every woman, no matter her age, needs to watch and check for symptoms of breast cancer. These include:
- New lump in the breast or underarm (armpit)
- Thickening or swelling of part of the breast
- Skin irritation or dimpling
- Redness or flaky skin in the nipple area or breast
- Pulling in of the nipple area or the breast
- Nipple discharge other than breast milk, including blood
- Any change in the size or shape of the breast
- Pain in any area of the breast
People should also be aware of risk factors. Being female and older are two ofthe biggest risk factors (women are 100 times more likely to get breast cancer than men), while other risk factors that people cannot change include: genetics, family history, dense breasts, women who started menstruating early or went through menopause late, previous chest radiation, exposure to diethylstilbestrol (DES) and long-term use of hormone replacement therapy.
Risk factors that women can change include: having had no children or a first child after age 30, drinking alcohol, being overweight and lack of physical activity. Recent studies are also linking tobacco use and night shift work to breast cancer.
All major health organizations agree that women 50 to 74 years should have regular mammograms, with no more than two years between them and most recommending yearly screenings. Some, such as the American Cancer Society and Susan G. Komen, recommend women start at age 40.
The Louisiana Breast and Cervical Cancer Program (LBCHP) and SurviveDAT are part of the CDC-funded Louisiana Cancer Prevention and Control Programs (LCP) housed at the LSU Health Sciences Center School of Public Health. For more information, go to www.louisianacancer.org.
By now, everyone has heard the statistics. One in eight women will be diagnosed with breast cancer at some point during their lives. But what most people don’t know is that 11 percent of those women will be under the age of 45.
A cancer diagnosis is scary enough. But if you’re a young woman dealing with breast cancer, you also often have to face issues that older women with the disease don’t. And one of those issues is the nature of the disease. One kind of breast cancer, triple negative, is more serious and harder to treat, and the sad fact is that triple negative breast cancer is more common among young women.
Add to that, in the United States, young black women are more likely to develop triple negative breast cancer than white women. In the 0 to 44 age group, approximately 20 percent of black women with breast cancer are triple negative versus 12 percent of the white women. Researchers don’t know why this is so, but it makes it particularly important that young black women be aware of their breast health.
There are other issues that young women with breast cancer face that have nothing to do with race and which also do not affect older women with the disease. For example, a younger woman diagnosed with breast cancer, but who might want to have children one day – or more children - usually has to make some quick decisions about how to address and protect her fertility before treatment begins, even as she may still be reeling from her diagnosis.
There are genetic ramifications as well. A diagnosis of breast cancer in a young woman can have genetic implications for both the males and females in her family. This knowledge is leading to more and more people seeking genetic counseling – a process that can also shed light on what may be the best treatment for the particular type of the disease that the young woman is facing.
Job and financial issues too are generally more profound for young women who are often just starting out or at the beginnings of their careers. And for a young woman on the dating scene, recently married, or dealing with small children who don’t understand what is wrong with mommy, there are rocky relationship issues that must be navigated.
Finally, sometimes, the issues just come down to simple things that a healthy young woman wouldn’t think twice about, but which can tremendously affect a young woman’s self-image. Being bald and having no eyebrows can make one self-conscious and unwilling to go out. Knowing where to find a good wig store or a makeup artist skilled in recreating eyebrows can make the difference between someone hiding from life or going on and facing it.
That is why the Centers for Disease Prevention and Control (CDC) recently expanded Louisiana’s existing SurviveDAT (www.survivedat.org) program and started statewide projects in Mississippi and Alabama (www.surviveMiss.org and www.surviveal.org respectively). Together, they now constitute the Gulf States Young Breast Cancer Survivor Network. The Gulf States have a high percentage of young black women and women living in rural areas without nearby access to advice or support. These women can now take advantage of the online resources, which include advice on a variety of topics, helpful listings and the latest news. Perhaps, most importantly, Gulf States Young Breast Cancer Survivor Network’s social media platforms will help these women connect to each other. As we all know, sometimes the best person to offer advice is the person who has actually been through it.
Heavy Burden of Young Breast Cancer in Gulf States Results in New Network
NEW ORLEANS – Many people know that one in eight women will be diagnosed with breast cancer. What most don’t know is that 11 percent of those women will be under that age of 45. And of that 11 percent, a disproportionate share of those women will be African-American and live in the Gulf States.
That is why SurviveDAT (www.survivedat.org), a support group for young breast cancer survivors that was launched in South Louisiana almost four years ago via a Centers for Disease Control and Prevention (CDC) grant to the LSU Health New Orleans’ School of Public Health, is expanding. Thanks to another CDC grant, SurviveDAT is going statewide this July and leading a partnership with Alabama and Mississippi called the Gulf States Young Breast Cancer Survivor Network.
Young breast cancer survivors often face issues that older women with the disease do not, including fertility decisions that need to be addressed before starting treatment, genetic factors (affecting male family members too), more serious types of the disease, career and financial implications and more. SurviveDAT and its partners in Alabama and Mississippi, SurviveAL (www.surviveAl.org) and SurviveMISS (www.surviveMiss.org) address these issues, while providing support, as well as national and local resources that these young woman need and want.
Table 2: Triple negative is a more serious form of breast cancer and is more common among young women. In addition, throughout the United States, African-American women are more likely to be triple negative than white women. In the 0-44 age group, approximately 20% of African-American women with breast cancer are triple negative, versus 12% of white women.
Table 3: Mortality rates for African-American women in Louisiana, Alabama and Mississippi are higher than in the United States, reflecting the higher incidence rates of the disease, the type of disease and other factors, including access to health care.
Providing this information and support online, in the form websites and social media makes sense in the Gulf States, as much of Louisiana, Mississippi and Alabama are rural and many women are unable to travel to in-person support groups. What these women do have is digital access, with young women, especially among the African-American population, using social media platforms and owning smartphones. SurviveDAT, along with its partner sites in Alabama and Mississippi, will now enable these women to find everything from health advice and the latest news on breast cancer to where they find a makeup artist skilled in recreating eyebrows lost to chemotherapy.
For more information, go to www.surviveDAT.org at facebook.com/survivedat and follow on twitter.com/survivedat. SurviveDAT is a special project of the CDC-funded Louisiana Cancer Prevention and Control Programs (LCP) housed at the LSU Health New Orleans School of Public Health.
It will be held from 6:00 pm – 7:30 pm at Cancer Services of Greater Baton Rouge, 550 Lobdell Avenue, Baton Rouge, LA 70806. Dr. Lauren Zatarain, Medical Oncologist will be the presenter.
SurviveDAT's NOLA Support Group Workshop
Mary Bird Perkins is hosting a surviorship workshop in conjunction with St. Tammany Hospital and you are invited!
Why is Louisiana's breast cancer death rate so much higher than the rest of America? Why is the colon cancer rate in Acadiana way above the national average? And what can be done to identify cancer earlier and provide the treatment patients need to defeat this disease? Louisiana Public Square brings together residents living with cancer and experts on the front lines of diagnosis, treatment and research to explore "Cancer in Louisiana." To view video clips, please CLICK HERE
On Saturday, April, 18, 2015, the Young Breast Cancer Survivorship Network will be hosting their 3rd Annual Young Breast Cancer Survivors Workshop at the University of Alabama, Birmingham School of Nursing from 10 am – 2pm. The workshop sessions include:
Breast Cancer Risk and Genetics
Young and Surviving
Families and Relationships
Survivorship Discussion Groups
Shake Your Soul Yoga Dance
SurviveDat would like to have our survivors in attendance at this conference. Registration and lunch is free and limited to the first 200 participants. However, other expenses may include hotel and travel. SurviveDat is offering 10 scholarships in the amount of $350 each to assist with these expenses. To qualify, applicants must be active members of SurviveDat (support group/workshop participation), commit to be at the entirety of the conference and complete a 75-word essay on how the knowledge gained at the workshop will be used to advance the mission of SurviveDat. Please include the following on your submission:
How long you have been a survivor
Location at which you participate (Baton Rouge, New Orleans, Covington)
Activities in which you have participated.
The deadline for submission is no later that March 26th at 12pm. Get a deal at one of the two conference hotels before April 1st (so don't delay). If you have any questions or need additional information, please contact Helen McMillan at HMcMi1@LSUHSC.edu
Cancer. It’s a word people fear and a diagnosis that often inspires fatalism. However, as World Cancer Day raises awareness about the disease on Wed., Feb. 4, the Louisiana Comprehensive Cancer Control Program (LCCCP) wants people to know there are at least six cancers they can easily avoid or catch early enough to beat.
1. Lung. Don’t smoke. Lung cancer is the most fatal cancer in the world and tobacco accounts for 90 percent of those deaths. That figure includes deaths from cigarettes, cigars and secondhand smoke, which is why businesses, municipalities and more are banning smoking. Even New Orleans, a city with a reputation for vice, has become the first city in the tobacco-friendly South to pass a smoking ban. The scientific evidence presented by LCCCP and other health organizations there, plus compelling testimony from musicians, waiters and others, made a strong case for the ban, even defeating industry attempts to exempt bars and casinos.
As for electronic cigarettes or e-cigs, the long-term studies needed to prove they are safe or help people quit smoking tobacco do not yet exist. And though some say they may be less toxic for current smokers, those studies also all note that e-cigs still have toxicants, are not carcinogenic-free and contain nicotine, which is addictive. The concentrated liquid nicotine refills used for e-cigs are also toxic, with the Centers for Disease Control and Prevention (CDC) noting a dramatic increase in calls to poison control centers from people who have ingested, inhaled or absorbed refills. These refills are marketed with attractive flavors, colors and scents that are particularly appealing to children, resulting in 51 percent of poisoning calls involving children five and under.
In addition, a study done by researchers at the CDC, the Food and Drug Administration and Georgia State University also found during 2011-2013, that the number of youth who had never smoked a cigarette, but had used e-cigs had tripled, while never-smokers who had used e-cigs were nearly twice as likely to intend smoking conventional cigarettes than never-smokers who had never used e-cigs. And, in a study just released in the New England Journal of Medicine, researchers found high levels of formaldehyde in e-cig aerosols, which they estimate could increase the risk of cancer five to 15 times higher than the risk of long-term smoking.
2. Colon. Prevent it by getting screened once you turn 50. The second leading cancer killer in the United States is colorectal. Surprised? More shocking is that it is a very preventable cancer. And now that the Affordable Care Act (ACA) requires coverage for preventive screenings, including colonoscopies, there is no reason for such deaths.
Health experts recommend everyone 50 and over be screened in order to find precancerous polyps, which can be easily removed or so that the cancer can be caught early, treated and cured. That is why the National Colorectal Cancer Roundtable has adopted as its slogan “80% by 2018” with the goal being to get that percentage of people 50 and over screened by that year. LCCCP is following that example and working to help form a Louisiana Colorectal Cancer Roundtable to improve statistics in the state, which has the fifth highest colorectal cancer death rate in the U.S. and even higher rates among its black male and Cajun populations.
The most well-known screening test, colonoscopy, is often called the “gold standard,” but public health experts also note “The best test is the one you’re going to get.” Other medical facility tests include fecal or flexible sigmoidoscopy; a double-contrast barium enema; or a CT colonography. At-home stool tests include the FOBT, FIT or Cologuard. Not all colon screening tests have been approved by the U.S. Preventive Services Task Force, so be aware insurance plans may not cover them. If anything unusual is found, a follow-up colonoscopy will likely be required.
Controllable risk factors include a diet high in red or processed meats, lack of physical activity, obesity and the use of tobacco and alcohol. Uncontrollable risk factors include family history of the disease, genetic syndromes (FAP or Lynch syndrome) and related diseases, such as inflammatory bowel disease, Crohn’s disease and ulcerative colitis.
3. Breast. Prevent it by getting screened on a regular basis. Pink ribbons notwithstanding, breast cancer still kills a lot of people (not all of whom are women.) It is the third highest cancer killer across the nation and the most common cause of cancer in women. But like lung and colon cancer, those statistics needn’t be that high.
Regular mammograms starting at 50 are recommended by all the major health organizations, with no more than two years between screenings and most recommending annually. And though some disagree as to whether women should start screening at 40, all agree women need to consider it at that age, with the American Cancer Society, the National Comprehensive Cancer Network and Susan G. Komen recommending women start then, while others such as the CDC and the American Medical Association recommending women 40 to 49 discuss the issue with their doctor.
Lifestyle factors that increase breast cancer risk include childless women or those who had their first after 30, drinking alcohol, being overweight and being inactive.
Women should know that ACA now requires coverage of mammograms and, if they still lack insurance and meet Federal Poverty Guidelines, they can get screened through the CDC’s National Breast and Cervical Cancer Early Detection Program (NBCCEDP), which exists in every state, the District of Columbia, five U.S. territories and in 11 American Indian/Alaska Native tribal organizations.
The Louisiana Breast and Cervical Health Program, is the NBCCEDP program in the state and a sister program to the LCCCP. It offers no-cost breast and cervical cancer screenings and can be reached at 888-599-1073 or at www.lbchp.org.
4. Cervical. Prevent it by having a Pap test on a regular basis and getting the HPV vaccine. The CDC unequivocally states “No woman should ever die from cervical cancer.” Regular Pap tests can detect the cancer early and are covered under ACA. And like breast cancer, cervical cancer screenings are available through the NBCCEDP and through the LBCHP in Louisiana at 888-599-1073 or www.lbchp.org.
Almost every adult in the U.S. will get the human papillomavirus at some point, with the CDC estimating 79 million American are currently infected. Most of the time, it does no harm, but it can cause genital warts and a number of cancers in both men and women, including 99 percent of cervical cancers. The HPV vaccine, one of only two existing cancer vaccines, can prevent all of those diseases and is administered to boys and girls starting at age 11 or 12, when it can generate its best immune response for the future and be administered long before any exposure to the virus.
Older people, including men up to age 21 (or 26, if gay, bisexual or have compromised immune system) and women up to age 26 are also eligible. Most private health insurance plans now cover the HPV vaccine at no out-of-pocket cost because of ACA, while low-income children may be eligible for it through the federal Vaccines for Children Program (www.cdc.gov/vaccines/programs/vfc/index.html).
5. Prostate. Talk to your doctor about screening. Prostate cancer is the most common cancer in men and there are screenings to detect it. However, treatment can sometimes have more serious consequences (bowel and urination issues, impotence) than the disease, which grows slowly and often does no harm. Therefore, health experts now recommend men discuss their situation and risk factors with their doctors starting at 50, and black men, because they are impacted more by the disease, at age 45.
6. Skin. Protect yourself from the sun and don’t tan, indoor or out. Skin cancer is the most common cancer in the United States, especially among white men. And the deadliest kind is melanoma, which is caused by sun exposure. So cover up!
For more information, go to www.lcccp.org.
The Louisiana Comprehensive Cancer Control Program (LCCCP) is one of the CDC-funded Louisiana Cancer Prevention and Control Programs (LCP) housed at the LSU Health Sciences Center School of Public Health. For more information, go to www.louisianacancer.org.
In collaboration with The University of Alabama Birmingham's School of Nursing, The Young Breast Cancer Survivors Network has added a "Video Page" to their website. The videos consist of several topics concerning the unique needs of today's young breast cancer survivors, as well as, caretakers and children.
Videos Topics Include:
· Communicating with your health care team
· Social relationships
· Chemo brain
· Late effects of cancer treatment
· Survivorship care planning
· Fertility preservation
· Nutrition during and after cancer treatments
· Skin cancer prevention (for cancer patients and general population)
NEW ORLEANS –Three years ago, the Centers for Disease Control and Prevention (CDC) awarded the Louisiana Cancer Prevention and Control Programs (LCP) at the LSU Health New Orleans School of Public Health almost $1 million for a project to raise awareness and develop support for young breast cancer survivors in south Louisiana. Called SurviveDAT, its success recently helped lead the CDC to award $2,242,000 for a five-year project expanding similar online resources to north Louisiana, Mississippi and Alabama.
The new project, which will be tagged as the Gulf States Young Breast Cancer Survivors Network, is a collaborative effort of LCP at the LSU Health New Orleans School of Public Health, the University of Mississippi Medical Center and the School of Nursing at the University of Alabama at Birmingham (UAB), which already has a highly regarded local initiative in place. The three, led by LCP Director Dr. Donna Williams at the LSU School of Public Health, will work together to create a website and social media presence that will provide online support and resources to young breast cancer survivors, with Mary Bird Perkins Cancer Center, an original partner in SurviveDAT, providing additional support in the form of resource gathering and graphics creation.
There are several reasons why the CDC is funding such an online support project and why these partners have come together:
- Young breast cancer survivors face unique issues when dealing with the disease, including more serious strains of the disease, fertility questions and barriers, partner/child concerns, career implications, sometimes severe financial ramifications and more.
- The three states feature a preponderance of breast cancer among young women, and rank second (Mississippi), fourth (Alabama) and fifth (Louisiana) in breast cancer deaths for women under 50. In addition, though black women have an overall lower breast cancer incidence rate than white women, they have a higher incidence of the disease under age 45. From 2007 to 2011, 40 percent of the young breast cancer cases diagnosed in Louisiana, Mississippi and Alabama were in black women.
- Much of Louisiana, Mississippi and Alabama is rural and/or low-income, which limits people being able to meet at or travel to in-person support groups; however, they are able to tap into online resources. The Nielson company says that 92 percent of people 18-29 use social media and 73 percent of people 30-49 do. The Pew Research Center says that women use social networking sites at higher rates than men, while young black women use them at significantly higher rates. Pew also says that almost 60 percent of black women have a smartphone, which is significantly higher than the number of white women who do; while almost half of all blacks with an income under $30,000 do as well. And smartphone use among young women, in general, is very high. All of these facts point to online resources and social media as being an effective way to reach young breast cancer patients.
“I didn’t want to deal with what was going on. Or I couldn’t deal. Because I didn’t have a really a group to talk to. None of my friends understood what I was going through,” said Shana Barr, a SurviveDAT member. “Everyone copes with tragedy in their own way. And I can’t tell you how to cope. I can tell people that they’ll regret it if they don’t find a group to talk to. ‘Cause you feel like you’re alone when you’re going through that. My best advice to anyone is … find a group. It helps.”
It’s that need that propelled SurviveDAT’s creation and the CDC to reach out to young breast cancer survivors across the gulf states.
“The CDC has long recognized the benefit that support can provide cancer patients when it comes to quality of life. However, there are a lot of people who suffer from cancer, but who live too far from an in-person support group or can’t afford to get there.” said Helen McMillan, SurviveDAT program manager. “Now, thanks to this grant, young breast cancer survivors in the three states with the most need can go online to find the advice, help and support they need. It’s a great example of how social media can help people.”
Expanding on the current Louisiana and Alabama offerings, the project’s website and social media will contain a variety of national, state and local resources from each state for young breast cancer survivors ranging from educational and technical information on breast cancer to more day-today practical advice on matters such as to where to buy wigs locally or listing makeup artists skilled in creating eyebrows for women who have lost them to chemotherapy. There will also be videos and interactive opportunities for these women to share their stories, provide advice and more. In addition, there will be helpful information for the people surrounding young breast cancer survivors, including providers, family members and caretakers.
To find out more about the Gulf States Young Breast Cancer Survivors Network, call Helen McMillan at 504-568-5858 or email her at firstname.lastname@example.org.
BATON ROUGE, LA (WAFB) - On Saturday, April 12, 2013 the Mary Bird Perkins Cancer Center will offer free screenings for cancer. It's called Fest For Life, part of the center's community outreach to educate the public and raise awareness for cancer and general health. READ MORE AND VIEW VIDEO
For those who have fought, and for those still fighting. We invite you to join our Krewe of Hope for a special celebration in a city that knows a thing or two about endurance, hope and survival. READ MORE
PINKOUT is the EHS basketball team's fundraiser for breast cancer research, and was inspired by our own basketball moms and breast cancer warriors, Kelli Beckman and Chiquita McKinley (David Wade's mother). When our baseketball families launched PINKOUT 2013, our goals were as follows: READ MORE
Started in 2011, SurviveDat has brought a fun and friendly atmosphere to breast cancer support for younger women battling the disease. With monthly meetings held at cancer services, SurviveDat brings playful and enjoyable support to New Orleans, Covington and Baton Rouge-area women in their 20s and 30s fighting cancer. Click here to continue reading.
What do Angelina Jolie and 2013 Miss America Pageant contestant, Allyn Rose have in common? They are young, beautiful, and both have elected to have bilateral mastectomies without an actual diagnosis of breast cancer due to a combination of family history and possession of the BRCA-1 gene mutation. Click here to continue reading.