Post by Judy Salerno
The following blog appeared in The Huffington Post on November 24, 2015.
I’ve heard it said, “Fall down seven times; get up eight.”
Resiliency is a defining factor of our humanity – the ability to overcome and push forward. We may stumble, but we get back up, not taking “no” for an answer, especially when we know we have something important to offer the world.
I have seen it firsthand so many times this year. My role at Susan G. Komen takes me around the world – literally. In fact, a week ago I was in Guangzhou, China, meeting with our partners to discuss new ways of combating breast cancer in the world’s most populous country, and today, I write this from Marrakech, Morocco. But it was as I traveled from Guangzhou to Hong Kong that I learned about the tragic events that had taken place in Paris.
The world watched as people fueled by hate attacked individuals enjoying a beautiful Parisian evening, intent on destroying our collective sense of happiness, safety and peace.
But through the chaos, one thing was undeniable: good people are everywhere you look. In the midst of devastation there were flowers, offering hope for a better tomorrow.
There were many heroes that night (and many since), from those who opened their doors as people ran from explosions, to the French emergency responders who tended to the victims.
Reflecting on their selfless behavior gave me a profound appreciation for all the heroes in life. Those everyday champions who put others first, committing their lives to something bigger than themselves in hopes of a better future for everyone.
Men and women serving on active duty. Volunteers collecting food and clothing for the less fortunate. Scientists unlocking the mysteries of cancer. These are heroes who, each and every day, are fighting for all of us.
Sometimes it just takes one inspired individual to change the world. Such was the case with the widely used breast cancer drug tamoxifen (originally created as a contraceptive). For all its therapeutic potential, the drug was nearly thrown in the garbage after proving to be an ineffective contraceptive in humans. That is, until Komen Scholar Dr. V. Craig Jordan (just a young man at the time) fought for the opportunity to continue testing the drug, but for a different reason – treating breast cancer. A reason that now offers hope to thousands of women diagnosed with breast cancer each year.
Passion for others is also making an impact in Zambia – a country that overcame a health crisis with HIV/AIDS to then be stricken by cancer. In Lusaka, the country’s capital, Komen grantee Dr. Groesbeck Parham and his team have had doors shut in their faces for the last 10 years as they sought to introduce cervical cancer screenings to public health care. People gave countless reasons why it couldn’t be done (from limited infrastructure and resources to ample apathy), but in his own words, they “were not interested in giving up.” Today, they are saving lives, and now working to introduce breast cancer screening in the country as well.
And sometimes, making a positive difference is much simpler, as it was with Daniel Fleetwood. I was astounded yet so encouraged by how even the smallest gesture – say, a tweet – can inspire a global effort to bring joy and serenity to someone’s final days (which, as the events in Paris remind us, sometimes arrive all too soon).
I see the everyday heroes every time I meet a woman, man or family facing breast cancer. Parents determined to live to see children through milestones – weddings, graduations, first days of kindergarten. The men and women by their sides who fight with them, holding back their own fear to be strong for the ones they love. I see those with advanced forms of breast cancer who know that they may not survive this, but will use their experience for something greater, so that others may not have to go through what they are enduring. Their strength gives me strength, and I am thankful for it.
So, as we approach the time of year many of us are giving thanks, my hope is that we not only appreciate the moments at hand but also the men and women who are creating a better future for which we can be thankful. We have seen what is possible when dedication and resiliency come together, and we know it will take nothing less if we want to take on life’s most challenging issues, like ending breast cancer, forever.
Guest Post By, Menopause The Musical Cast Member and Breast Cancer Survivor Megan Cavanaugh
I’ve performed in Menopause The Musical for the last eleven years, and I’ve loved it. The current tour is special, and very near and dear to my heart; it’s the Survivor Tour, in partnership with Susan G. Komen – and I’m a survivor.
My life changed while I was on tour with Menopause The Musical in Springfield, Illinois. I got a phone call telling me that the result of my biopsy (from a routine mammogram) was “invasive carcinoma.” I left the tour and met with my surgeon, and she explained that given the size of the tumor, I was probably stage I ILC (Invasive Lobular Carcinoma). After an MRI, five more tumors were found. I had a partial mastectomy and four lymph nodes removed, three of the four lymph nodes tested positive for cancer so I had seven more lymph nodes removed – which, thankfully, all came back negative. But those blasted three positive nodes meant I was going to have to endure chemotherapy. I was now stage II ILC.
I had four chemotherapy sessions every three weeks, and lost all my hair, then thirty radiation treatments. The day after my last radiation treatment, I was on a flight to the east coast to attend my nephew’s wedding and join a new Menopause The Musical tour. I was bald and worried that I wouldn’t have the energy, but with the support of my spouse and the cast and crew I did it – followed by 48 more shows!
I now am dealing with lymphodemia of the left breast. I also have to take Femara for five years. This drug inhibits the estrogen production in my body, as my cancer feeds on estrogen, but it also majorly increases hot flashes and night sweats. While traveling on tour I single handedly steam up the van windows near me and I have totally become my Earth Mother character “Dripping and Dropping” (one of the parodies in Menopause The Musical to the classic Dusty Springfield song, “Wishing and Hoping”)!
When I came back to tour I was bald and wearing a wig for the show. I was so uncomfortable and the producers said, “Don’t wear it.” So I went on stage with peach fuzz hair and I had women coming up to me at the end of the show telling me they were cancer survivors.
Every person I know has been affected by cancer in some way, and I’m humbled and empowered to share my story of hope and strength if it can help one person. Breast cancer affects our bodies and can make us feel “less than” or not pretty – but LIVING beyond it is incredible and so empowering. You are beautiful with all your scars, and bald heads, and cancer does NOT define you, but it does change you. It has changed me – to be grateful for today. My sister Mary Cay, died from brain cancer and every day I miss her, however I am grateful for today. My living through this has made me so much more alive living each day and loving my life. I’m so excited to share a tour of laughter and hope with you all, one show at a time.
When we read a health research-related story, we really want to know how the results affect us. When and/or how will the findings change how doctors treat breast cancer?
We asked two Komen Mission Advisors to share how they weed through late-breaking news stories: Komen Scholars Dr. Kathy Miller, of Indiana University; and Cheryl Jernigan, who is also a patient advocate member of our Scientific Advisory Board and Advocate in Science.
1. Beware of glitzy, simple headlines and “too good to be true” claims.
Kathy Miller: It’s important to remember the news media is a business, and an increasingly competitive one. Media outlets pay their bills by selling advertisements, and ad sales are determined by the number of eyes/ears that see/hear them.
One way to be successful at that game is to play up the “hype,” especially in the headlines. A good headline grabs your attention and makes you want to read more or stick around for the full story – they aren’t meant to tell you the full story. Journalists do care about accuracy and take their role in informing the public seriously – but that tension between ratings and reporting can have some unintended consequences. So, be wary of “breakthroughs” that sound too simple and too good to be true.
Remember: Breast cancer is complicated; it doesn’t lend itself to simple one-size-fits-all answers or 30-second sound bites.
Cheryl Jernigan: I completely agree. If it sounds too good to be true, it probably is too good to be true! For instance, when Herceptin was discovered, headlines proclaimed breast cancer had been cured. Herceptin is only effective in breast cancers that express HER2/neu. For those whose breast cancers do not express HER2/neu, Herceptin is not an option.
2. The devil is in the details – figure out how relevant or significant the findings are.
CJ: The first thing to check is whether the study was done with cells, animals or people. If it was in cells or animals, it can take a decade or more before patients can access it. And the reality is that most of these studies—even when they are successful in animals—are not fruitful when tested in a clinical trial (a study in which people voluntarily participate).
If the featured study is about a treatment in a clinical trial, you need to ask:
- Has the trial even finished yet?
- What “phase/type” was the clinical trial? There are four types of clinical trials a treatment must go through prior to becoming the standard of care.
- How large was the trial? Basically, the fewer the number of people who participate, the greater the chance it may not be ready for every patient just yet.
- Did the trial find improvements in survival or evidence that cancer could not be found (i.e., “pathological complete response” or no evidence of disease [NED])? While the latter is generally a good thing, remember that not finding cancer doesn’t mean it’s gone or it won’t come back.
- Which breast cancer type and percent of the breast cancer population will the study apply to?
KM: Yes, ask lots of questions. In addition to the ones outlined by Cheryl, I would add:
- Where was the study done, and who has funded it?
- Has this question been asked in other trials? Where the results similar to this study?
- Have the results been presented at a conference or published in a scientific journal? Most articles in scientific journals are peer-reviewed—scientists reviewing the work of other scientists—prior to publication.
The article you’re reading may have a link back to the journal or original publication, which should have most of this information. If you’re not seeing it, don’t hesitate to search the web!
3. Look for balanced reporting.
KM: A good report will discuss pros AND cons, benefits AND risks. All drugs, treatments or procedures have some side effects. If the potential harmful effects aren’t described or are minimized by simply saying the “treatment was well tolerated,” I’d be cautious.
CJ: Oh yes, beware of tolerating the use of “tolerated.” Research has shown that clinicians often misperceive what patients are “tolerating,” and when asked, patients often report greater symptoms and/or intensity of symptoms than their physicians would.
What are the side effects? Are the benefits worth having the patient “tolerate” the side effects? How does it compare to what’s available now? What difference did or will it make in how people feel, function or survive?
Another “side effect” that is rarely covered in articles is financial toxicity. Even with just the deductibles and co-payments, costs can be devastating to breast cancer patients. So asking what this new drug or procedure is going to cost is very important.
4. Consider what’s missing from the story. What isn’t the author telling you?
CJ: Most stories fail to tell us the real risks, and prefer reporting relative over absolute risks. And relatively speaking, you absolutely need to understand the difference! (Check out the graphic to the side for an explanation.)
KM: Even my most savvy patients struggle to know if a new treatment or new research development might apply to them. News reports are short and often leave out crucial information.
I remember when aromatase inhibitors were first approved – the nightly news just had a short blurb about a “new, more effective treatment for breast cancer.” Everything they said was true… but they never said this new treatment would only be effective for postmenopausal women with hormone sensitive tumors. I fielded many phone calls in the ensuing days from young women with ER-negative tumors who had no way to know that the new drug wouldn’t work for them.
5. Consider the source of the information. Be wary of potential bias or conflicts of interest.
KM: Sometimes it is hard to tell the difference between an advertisement and a news story or scientific report. Ask yourself, who sponsored the study? Who stands to benefit if this is true? I don’t mean to suggest study sponsors aren’t reliable or should be ignored; but there can be biases in which studies are reported as well as how studies are reported.
CJ: Yes, for example, the reporter may base his or her article on a press release. It is very important to always try to go back to the original scientific article or source. Also, look for whether there are any recommendations or validating quotes or comments from independent or unbiased sources.
KM: I agree: I’d pay little attention to quotes from the lead researcher or company executive. Of course they think their results are important and will have a significant impact (duh!). Instead, look for comments by someone who wasn’t involved in the study or the sponsoring organization – if the results really are a breakthrough, other researchers will recognize it.
CJ: And remember that research is call “RE-search” for a reason. All results must be verified by different people in different places. Some trusted evidence-based news sources that I rely on are komen.org and the government websites for the NCI, CDC and the FDA.
Learn more about different types of research studies on komen.org
During October, pink is everywhere. It’s in your stores, on TV, on the highway – even your favorite sports teams are wearing the color! Many find themselves wondering, “What is with all the pink, and how does it really help?”
Here are just a few examples of how Komen partners are using pink throughout the month of October to help make an impact, and move us toward a future without breast cancer.
When your flight attendant is wearing a pink ribbon…
American Airlines is Komen’s longest-standing corporate partner. Since 1983 American Airlines has contributed more than $8 million to Susan G. Komen-funded projects, including a multiyear research grant focusing on inflammatory breast cancer (IBC) – a rare and deadly form of the disease. This research became personal for American Airlines employee Suzanne George after her 27-year-old daughter Sarah was diagnosed with IBC that had already spread to her liver and bones by the time it was discovered. Suzanne supported Komen and the Be Pink program for years, but “never could have imagined” that her daughter’s survival could rest on cutting-edge research supported by American’s employees and customers.
WWE and its fans have raised more than $1.5 million over four years to support breast cancer research, education and screening through the sales of pink shirts and gear each October. But WWE’s support goes further than dollars. WWE Superstars recently helped create public service announcements with important breast cancer information that will reach more than 560 million people across social media and more than 14 million viewers who watch WWE every Monday night. That’s a lot of people getting potentially lifesaving information about breast cancer!
Zumba created the Party in Pink global movement, which consists of classes and apparel sales to fund the fight against breast cancer. Recently, Zumba expanded its contribution by creating The Zumba Global Research Grant. This grant explores whether a substance in flaxseed can actually prevent breast cancer, potentially offering an affordable, natural and globally available way for women to protect themselves against the disease.
“America’s Team,” has been going pink for Komen in October since 2010, contributing more than $250,000 to Komen’s mission. The Cowboys donate five percent of sales from Komen iPromise Cowboys merchandise. Very importantly, their nationally televised games in October elevate the cause. This year, the Cowboys are honoring and celebrating breast cancer survivors throughout October, including a very special “Star Survivor” contest this year.
In 2015, Ford Warriors in Pink®, created The Good Day Project offering tips, tools and ideas that help give those touched by breast cancer more good days. As part of the initiative, Ford teamed up with Lyft, a ride-sharing service, to give breast cancer patients free rides to and from treatment and partnered with Meal Train, an online tool, that allows you to organize meal delivery, childcare, household help, etc. to assist families fighting breast cancer. You can also send free postcards or purchase apparel online where 100% of the proceeds support the fight against breast cancer.
We’re thrilled that our partners go beyond raising funds to host programs that support their employees, customers, families and survivors everywhere.
Pink is more than just a color or a ribbon. Pink helps raise awareness for breast cancer, encourages women to be proactive about their breast health, raises money for research programs, and is a symbol for breast cancer survivors and families that there is hope and that they are not alone in their fight.
To learn more, Meet Our Partners.
By Katy Hunt, Susan G. Komen Global Programs Manager
The biggest health crisis around the world is the growing burden of non-communicable diseases, disproportionately affecting the world’s poor, young and urban citizens.
China is no exception. Breast cancer is the second-most common cancerand the second leading cause of cancer-related deaths – after lung cancer – among women in China.[i] While the Chinese government has taken serious steps to respond to these sobering breast cancer statistics, it continues to be a serious health issue.
To support China’s efforts to reverse these deadly trends, Komen is partnering with GE healthymagination, the All China Women’s Federation, and the China Women’s Development Foundation to advance breast cancer awareness and education.
Last month, Komen’s VP of Research and Community Health Programs Operations Victoria Wolodzko and I traveled to China to test breast cancer education materials and meet with our local partners who are supporting our breast cancer efforts. Our destination was Zhongshan, a coastal city in southern China.
In Zhongshan, we met an amazing group of young survivors. As with most meetings, it began with introductions and stories shared. We quickly noticed that each woman’s story mentioned Yan Qing, the meeting hostess.
One of the young survivors shared that she was deeply depressed when she first met Yan at the hospital. Facing 20 rounds of chemotherapy, she felt hopeless to cope with the side effects – physical, emotional and financial. Yan arranged for financial assistance and was there to support her emotionally. That’s when she realized she was not alone. When she shared her story with us, she offered her thanks to Yan. Smiling, Yan simply said, “She is the strong one.”
A breast cancer survivor herself, Yan knows what it means to be strong. She was diagnosed with breast cancer in 2011, and felt afraid and hopeless. But she believed that her own experience as a breast cancer patient could help others.
Yan became a qualified social worker in 2012, and established the Zhongshan Breast Cancer Suppor
t Group, a peer support organization. She inspired all those around the table that day – and many others – to fight on for themselves and their loved ones.One survivor shared, “For me, working on this breast cancer project is like a gift – I am connecting with so many inspiring women, like Ms. Yan Qing. This work also helped me to pay attention to my own breast health. When I had surgery to remove mammary fibroma in 2014, I deeply and truly felt how meaningful my work is. I am very proud and grateful to be part of this project.”
Zhongshan Breast Cancer Support Group has grown since 2012, and was recently awarded a grant from All China Women’s Federation in recognition of the organization’s outstanding work.
We’re proud of the work we’ve done in China toward our mission with these outstanding partners, and we will continue to fight breast cancer in countries across the globe until we’ve realized our vision of a world without breast cancer.
[i] Ferlay J, Shin HR, Bray F, Forman D, Mathers C and Parkin DM. GLOBOCAN 2008 v2.0, Cancer Incidence and Mortality Worldwide: IARC CancerBase No. 10 [Internet]. Lyon, France: International Agency for Research on Cancer; 2010. Available from: http://globocan.iarc.fr, accessed on 08/19/13.