The following blog appeared in The Huffington Post on July 7, 2014.
There are many interesting people in the breast cancer movement, and Shirley Mertz ranks among one of the most interesting. A former high school principal, Shirley leads the Metastatic Breast Cancer Network and serves as a Susan G. Komen Advocate in Science, bringing the patient’s perspective to Komen’s research granting decisions. Shirley has also had metastatic breast cancer for the last 11 years, living like so many with a schedule of regular checkups where she learns whether the latest treatment is working and, if not, which treatment to try next.
It’s a cycle she calls “Scan, treat, repeat…” and like so many, she thinks breast cancer organizations can do better. So Shirley advocates on behalf of those living with metastatic breast cancer to support patients and work for better outcomes in the clinic.
I was pleased to share the dais with Shirley last week at a media briefing about metastatic breast cancer, hosted by Pfizer. We were joined by Dr. Marc Hurlbert, executive director of the Avon Foundation for Women Breast Cancer Crusade, by Sally Susman and Dr. Cynthia Huang of Pfizer, and by Amy Robach, the ABC News morning anchor whose recent breast cancer diagnosis has made national headlines.
The conversation was frank. Metastatic breast cancer — that is, cancer that’s spread from the breast to other organs — causes the majority of the 40,000 breast cancer deaths annually in the United States. The five-year relative survival rate for metastatic disease is only 24 percent, although there are women, like Shirley, who may live with the disease for many years.
Metastatic breast cancer claimed the life of our namesake — Susan G. Komen — who was diagnosed with breast cancer in 1977 and died three years later. In Suzy’s time, people crossed the street to avoid her, unsure of what to say and perhaps even afraid they would “catch” her cancer. Breast cancer wasn’t discussed in polite company, even in the 1980s. There were few breast cancer centers, little in the way of treatment options and a stigma and shame around breast cancer itself that kept many women feeling isolated and alone with their disease.
Unfortunately, many living with metastatic disease feel that same isolation today. They deal with friends who don’t quite know what to say, anxious family members and even with those who suggest that maybe these patients aren’t “fighting hard enough” or didn’t do something to prevent their disease. There are often significant psychological, physical and financial pressures along with the fear that the latest treatment will stop working.
“Since there is no cure, we are always in treatment,” Shirley told us.
We can and must do better for the tens of thousands of women and men living with metastatic breast cancer in the U.S., and for those who will be diagnosed with it. Fortunately, breast cancer organizations have heard this call and are stepping up.
Last fall, 16 breast cancer organizations, including Komen, came together to form the Metastatic Breast Cancer Alliance (MBCA). Four new organizations have joined the fold since then, working in partnership to address the most pressing issues in metastatic disease. Dr. Hurlbert serves as MBCA chairman.
Komen has funded $91 million in scientific research into metastatic disease in just the past eight years alone. Very importantly, we’re also working to cut through the isolation and stigma of metastatic disease by funding outreach programs in hundreds of communities across the country. These programs provide insurance co-pays, medical supplies, rent, groceries, transportation to treatment and other services, offering real-time help for people dealing with the profound physical, financial and emotional challenges of this disease.
As I participated in this event last week, it affirmed my belief that organizations like Komen, Avon and others can and must work together on issues such as metastatic disease in an even more collaborative and focused way. The formation of the Metastatic Breast Cancer Alliance is one step but, again, we can all do more.
Cancer organizations large and small can jointly fund high-reward research. We can develop and fund more widespread metastatic programs. And we can jointly develop programs to address disparities in treatment that lead to worse outcomes for many women of color and medically underserved individuals.
My pledge as president and CEO of Komen is to seek greater collaboration among cancer organizations, research organizations and industry in order to ensure we do everything in our power to end the most lethal forms of breast cancer.
We can do this, and we must do this. Because lives literally hang in the balance.
Post by Jacqueline McKnight, Susan G. Komen Scientific Programs Specialist
Since 1982, Komen has played a critical role in many advances in the fight against breast cancer – transforming how the world talks about and treats this disease and helping to turn millions of breast cancer patients into breast cancer survivors.
With that in mind, last week I had the privilege of attending the 7th Biennial Cancer Survivorship Research Conference in Atlanta, GA, which garnered over 500 attendees from at least 32 countries around the world.
When you enter the “cancer world,” particularly by way of employment, you begin to see the same people over and over at conferences and meetings, so as I looked around, I started taking a mental inventory, “There is Komen Scientific Advisory Board member Dr. Amelie Ramirez . There is Kathy LaTour, editor at large for Cure Magazine. There are Komen Scholars, Drs. Ann Partridge and Patricia Ganz.”
As I studied the attendees at the various sessions, I realized that the attendance was nearly 90 percent women. Many had been tasked with implementing survivorship programs at their hospitals. The idea of a survivorship program is so new that the variety and depth of these programs vary greatly. One young woman from Oregon was a physician’s assistant, and had only recently begun survivorship appointments with oncology patients once or twice once they’ve finished their treatment. I believe that the conference opened her eyes to the complex and ongoing needs of these survivors, most of whom will need more than one or two follow up appointments if they are to receive comprehensive survivorship care.
Another young woman has developed, over the past two years, a program that follows survivors beginning in the middle of their cancer care so that survivorship services and staff are not new to them as they matriculate out of treatment. She helps patients with navigating insurance claims, she discusses and advises on everything from financial burden to sexual side effects and follow up care. I was impressed with the comprehensive nature of the program, and I knew this young woman would be successful with her survivorship program when she told me that survivorship care plans are great, but that people in the field are so focused on the plan that they often overlook the needs of the patient.
One of the major tenets of the meeting was that just as medicine is becoming more and more personalized, so must survivorship care. This young woman had already recognized and acknowledged the unique needs of every patient.
This patient-centered focus is exactly what leaders like Ramirez, Stovall and Ganz encourage and foster in others. The outstanding research presented by an impressive array of panelists on how to engage patients in self-advocacy, how to reduce barriers for the underserved, the value of cohort studies and other sessions were all interesting and valuable. However, for the attendees, most of whom care for patients, the most valuable part of the conference had to be the opportunity to interact with all of the seasoned, passionate, powerful female leaders in the cancer care world. These young women represent the next generation of caregivers and they are the people holding the hands, hearts and hopes of the 14.5 million (and growing) cancer survivors in the United States today. It is important that they receive the best mentorship possible and they certainly did at this meeting.
Learn more about quality of life and steps individuals can take to increase chances of surviving breast cancer on our Survivorship Topics webpage.
Post by Komen Scientific Advisory Board Member Dr. Amelie G. Ramirez
Breast cancer research has shown us that when it comes to reducing the risk of this disease, there may be factors that aren’t related to genetics or cell biology that we actually CAN control.
Emerging research into diet, obesity and exercise has helped us learn even more about the link between a healthy lifestyle and reducing the risk of breast cancer, including:
- A high body mass index (BMI) has been associated with increased risk for postmenopausal breast cancer;
- Exercise may reduce breast cancer risk by altering metabolism and hormones, as well as breast density; and
- Calorie-restricted diets may prevent the development of breast cancer, and help to maintain immunity against breast cancer as we age.
Research is also showing us that eating the right food can help fight cancer.
But, what foods fight cancer? What foods don’t? Are there such things as healthy — and tasty — meals and snacks?
Previous studies have shown that eating fruits and vegetables may slightly lower the risk of some types of breast cancer. Carotenoids, a natural orange-red food pigment found in foods like carrots and squash, have been linked to a reduced risk of breast cancer, and researchers are also investigating the effect that dairy, meat, folate (found in leafy greens) and other foods can have on breast cancer risk and development.
While these studies are promising, more research needs to be done to answer our questions about diet and cancer prevention.
Susan G. Komen has invested more than $20 million into research that is addressing these questions and others about the relationship between diet and exercise and breast cancer prevention. Whether it’s research into phytoestrogens (plant estrogens present in soy and some herbs) or the benefits of a diet rich in fish oil, Komen’s research investment in this area spans diet, exercise and obesity.
My own research in the San Antonio area has focused on diet as well. With funding from Komen, my team and I recently launched a new study to teach breast cancer survivors how certain foods may reduce the risk of breast cancer recurrence as well as the risk of developing other cancers.
Our study, Rx for Better Breast Health, will randomly assign breast cancer survivors to one of two groups. Each study group will get different cancer nutrition tools, possibly including cooking demonstrations by Chef Iverson Brownell, who specializes in creating healthy, tasty culinary recipes.
We hope this will shed new light on how a specific dietary plan can impact inflammation, a process that contributes to the development and spread of cancer.
Inflammation is the process your body uses to protect itself in response to infection or injury. Although inflammation is a vital part of the healing process of wounds and infections, if inflammation becomes chronic, it can actually contribute to illness, like cancer.
Some foods can help fight or prevent inflammation such as deep marine fish, dark leafy green vegetables, bright multi-colored vegetables, black and green teas, and many spices and herbs.
My team and I also explain the link between obesity and cancer, and the relationship between inflammation, cancer and diet, in a new, free downloadable cookbook, Nuestra Cocina Saludable: Recipes from Our Community Kitchen. The cookbook, available in English or Spanish, has 46 recipes for healthy, delicious foods straight from real women’s kitchens in South Texas, which have been nutritionally evaluated and improved by a registered dietician.
We hope our efforts prove that eating right is not only good for your health and weight, but can actually help women prevent breast cancer in the future.
Amelie G. Ramirez, DrPH, an internationally recognized cancer health disparities researcher, directs the Institute for Health Promotion Research at the UT Health Science Center at San Antonio, which studies Latino health disparities. She has spent 30 years directing research on human and organizational communication to reduce chronic disease and cancer health disparities affecting Latinos, including cancer risk factors, clinical trial recruitment, tobacco prevention, obesity prevention, healthy lifestyles, and more. She founded the SaludToday Latino health campaign, which has a blog, Twitter, Facebook, and YouTube page. She also trains/mentors Latinos in behavioral sciences and is on advisory boards for LIVESTRONG, Susan G. Komen for the Cure, and others.
Post by Mariel Caballero, Multicultural Marketing, Susan G. Komen.
Family comes first. It’s an expression – but really, a way of life – by which many of us who come from Latino families live.
But we’ve also learned at Susan G. Komen that many Hispanic/Latina women in the U.S. and around the globe are putting their families first, but putting themselves – and their health – in a risky second place.
Breast cancer is the most commonly diagnosed cancer among Hispanic/Latina women in the U.S. And Hispanic/Latina women are more likely to be diagnosed with late-stage, larger and/or more difficult-to-treat tumors. We want to change that.
This is why Komen works to educate Hispanic/Latina women about their risk, and empower them to go see a doctor if they notice something abnormal. Last month, I had the opportunity to go to Guadalajara, Mexico, and support our partner NatureSweet as they encouraged their employees to make their health a priority – including their breast health.
Since our partnership began in 2012, NatureSweet has donated more than $150,000 to support Komen’s mission. But I got to see their true commitment to the fight against breast cancer (and to their employees!) at a recent Health Fair and Training that was hosted at their Zapotlan plant.
Since this particular plant has a high percentage of female employees, NatureSweet wanted to take the opportunity to talk about all aspects of women’s health, inviting Komen to host a Spanish breast cancer awareness and education session.
We were expecting about 40-50 people to attend, but more than 150 individuals, including NatureSweet’s leadership team, attended the session, learning more about breast cancer and our global mission to end it.
I told the attendees that family is important, but if you love your family, and you want to live many happy years with relatives, or watching your kids grow up, then you HAVE to take care of yourself. There were women in the audience who admitted that if they had a health issue, they’d just ignore it. One woman told me that a friend of hers recently found a lump in her breast, but didn’t want to go to the doctor.
We discussed some of the statistics and cultural behaviors that affect women in Mexico. During the discussion, I encouraged the audience to talk to at least three or more women, and share what they learned during that session. Every 60 seconds, someone loses their life to this disease, so it’s not something that can wait!
We must take care of ourselves the same way we take care of our families.
Sharing information about breast cancer and inspiring Hispanic/Latina women to take charge of their health will make a huge impact in the lives of women now, and for generations to come, and I’m so pleased that NatureSweet gave us the opportunity to talk about this important issue. I think about the women in that session, and I hope that they really did tell three people about breast cancer, and that those individuals told three more people…
If we truly want to put our families first, then let’s make sure to educate ourselves – and our families – so that maybe someday no one will have to lose a mother, sister or friend to breast cancer.
Post by Erica Kuhn, Manager, Health Publications, Susan G. Komen
Five years ago I “virtually” met Christine – a passionate advocate of male breast cancer. Christine tells everyone – everywhere she goes, whether she knows them or not – that men can get breast cancer. Why? Because Christine lost her beloved husband, Paul, to the disease, and vowed to advocate for and educate people about male breast cancer for the rest of her life.
I have never forgotten her. She touched me, and continues to inspire me to help Komen promote male breast cancer education and awareness. Komen has had a huge impact on the breast cancer movement, investing more than $2.5 billion for our mission to save lives and end this terrible disease. I believe it’s our job and our passion to remind the world that our vision of a world without breast cancer includes male breast cancer. I feel I owe it to her and her husband – no, it’s more than that. I want to do what we can to spread the message.
It’s a simple message, really: “Men get breast cancer too!” The statistics may be low, but still about one percent of all breast cancer cases in the U.S. occur in men. That means this year alone about 2,360 new cases of invasive breast cancer are expected to be diagnosed in men, and 430 will die. Those are our husbands, fathers, grandfathers, uncles and our friends.
That’s why today, while we celebrate the men in our lives, we also encourage family members to talk to each other about male breast cancer. We encourage doctors to talk to their patients about it. Learn all you can.
Here are some important facts you should know:
- Although some factors have been found to increase the risk of breast cancer in men, most men who are diagnosed have no known risk factors (except for older age). In men, breast cancer occurs most often between ages 65 and 67.
- Breast cancer screening tests such as clinical breast exams and mammograms are not recommended for most men. However, some men at higher risk of breast cancer (such as those with a BRCA1 or BRCA 2 gene mutation or a strong family history of the disease) may benefit from screening.
If you have concerns about your risk of breast cancer, talk to your doctor.
So what should you be looking for? The most common sign of breast cancer in men is a painless lump or thickening in the breast or chest area. However, any change in the breast or nipple can be a warning sign of breast cancer, and needs to be checked. Don’t ignore it or wait too long to get help because you are embarrassed or worried. Putting off seeing a doctor may result in a delay in diagnosis. Survival is highest when breast cancer is found early.
Read about treatment options for men who are diagnosed with breast cancer.
Because most people think of breast cancer as something that only affects women, men who are diagnosed may feel isolated and alone. A man may likely be the only man with breast cancer at his treatment center, or the only man he knows with breast cancer. Finding sources of social support may help. If you have questions or concerns, call our breast care helpline at 1-877 GO KOMEN (1-877-465-6636). Or, check out our Message Board forum for male breast cancer survivors to talk to other male breast cancer survivors about the challenges of living with breast cancer.
So, as we approach Father’s Day, if you are lucky enough to get to spend the day with your dad, I encourage you to hug him a little longer, and be sure you tell him you love him, not just today, but every day. And, remember, spread the message: men can get breast cancer too!