When Running to the Store Feels Like Running a Marathon – Offering Help and Support for People Facing Breast Cancer
As many patients and families know all too well, a cancer diagnosis can make the daily challenges that once seemed relatively simple suddenly become overwhelming. At CancerCare, we strive to provide assistance to people with cancer that can help cover costs related to treatment, to ease some of that extra burden and provide peace of mind.
That is why I am extremely pleased to share that CancerCare has received $1.5 million from Susan G. Komen to assist people diagnosed with breast cancer.
This generous grant will continue to support the Linking A.R.M.S.™ program, which provides financial assistance for breast cancer patients for hormonal and oral chemotherapy, pain and anti-nausea medication, child care, transportation, lymphedema care and durable medical equipment.
Through this partnership with Komen, CancerCare has provided over $4 million in direct financial assistance, helping more than 15,000 patients nationwide since 2003.
One of these patients is Kay, a stage IV breast cancer patient who lives by herself in Georgia. She recently reached out to express her gratitude for the financial assistance she received. “I am truly appreciative of all the assistance that has been given to me from day one – starting with my mammogram, through treatment, and post-treatment,” she shared. “The Komen program and CancerCare have been a real blessing to me – and I’m sure countless others. Thank you so much!” Kay also joined one of CancerCare’s breast cancer support groups.
Day in and day out, we receive personal notes from people like Kay. Another grant recipient recently wrote us to say that, in addition to receiving a transportation grant, speaking with a social worker about her situation empowered her to join a weekly support group for women with metastatic breast cancer.
We are thrilled to see that the funds provided by Komen have had such a positive overall impact on people’s day-to-day lives.
Moreover, I am glad to report that nearly 60 percent of patients who submitted program assessments after receiving financial assistance from Linking A.R.M.S., reported improvement in their emotional well-being as a result of the grant.
We are tremendously grateful for the continued support of Komen and each person who helps raise funds to make this program possible. We’re excited to go forward and serve many more families in the coming year.
Those interested in learning more or applying for financial assistance can visit www.cancercare.org/financial or call 800-813-HOPE (4673).
While breast cancer is the most common cancer and the leading cause of cancer death among women in the Kingdom of Saudi Arabia, many of those affected do not seek medical care immediately. As a result, women in the region are often diagnosed with breast cancer at a late stage – when there are fewer treatment options and outcomes are worse.
Many of the issues, challenges, barriers and fears that the women in Saudi Arabia face are similar to those faced by women everywhere. We heard women share their fears of dying, the pain, and the unknown during our recent trip to Riyadh in the Kingdom of Saudi Arabia.
Komen, in partnership with GE healthymagination, has been working with the Saudi Arabian Ministry of Health to promote the importance of screening and early detection since 2012. More than 27,000 women have been screened by mammography since the Ministry of Health program launched!
We went to Riyadh to educate a team of health educators and physicians about breast cancer, and ways they could speak to others in their community about the importance of screening and early detection.
The word “training” doesn’t exactly bring crowds of people. We were excited to have 40 people registered for the training… and then we were astonished when 41 showed up! Who has greater than 100 percent of registrants show up at training? This is a testament to the commitment of the National Breast Cancer Screening Program of the Ministry of Health to the women in their community, as well as the leadership and passion of Program Director and Breast Radiologist Dr. Fatina Al Tahan.
One of the most moving moments of the day was when a young survivor, Hessa, bravely shared her own breast cancer journey with fellow members of this very conservative community. Hessa was in her twenties when she was diagnosed with breast cancer, and her story left quite an impression on attendees, showing that not only can young women get breast cancer – they can survive!
We were also excited to welcome participation from other Komen partners in the region – breast cancer trainers from the Jordan Breast Cancer Program of the King Hussein Cancer Foundation, who lent their expertise and cultural knowledge.
Throughout our trip, we had the opportunity to see some of the innovative ways the Ministry of Health is reaching women throughout Saudi Arabia.
For example, one group is reaching women through a mobile mammography unit strategically parked outside the Social Security office (which serves underserved Saudi citizens) – screening about 25 women a day.
Since women don’t drive in Saudi Arabia, Dr. Fatina’s team brainstormed another innovative solution: place well women screening clinics in two large malls, allowing women to access breast health services as well screening for the most common chronic diseases by checking also their blood sugar, blood pressure, BMI and osteoporosis which make the concept of screening more approachable to women the same place where they shop!
This trip far exceeded any expectations we had. We were so grateful for the hospitality we received during our brief visit, and inspired by the unwavering dedication by all involved with the country’s breast cancer efforts.
We at Komen remain committed to supporting breast cancer efforts in the Kingdom, and will continue to work in partnership with governments, businesses and organizations worldwide until we fulfill our vision of a world without breast cancer.
By Jennifer Polo, Susan G. Komen Breast Care Helpline Specialist
I’ve spoken with many callers in my last two years with the Komen Breast Care Helpline, and it’s not often we get calls from men. When we do, they are often calling on behalf of a wife, sister or friend who has been diagnosed with breast cancer.
Rob, however, was an exception. He, like roughly 2,000 other men in the U.S. this year, was shocked to hear his doctor say, “You have breast cancer.”
He called the Helpline feeling frustrated, embarrassed and alone. He needed support, and was unsure where to find it.
Not only had he been diagnosed with breast cancer, but it was triple negative disease. This subtype of breast cancer is rare and very aggressive, and is not found very often in men. (Rob actually had good humor about this, saying that he thought it was pretty remarkable that his tissue was going to be collected and studied by breast cancer researchers.)
Rob had just undergone a lumpectomy and eight rounds of chemotherapy. His surgery left him with what he described as “a hole in [his] chest.” Any time he took off his shirt in public, people would ask about the hole: what it was, why it was there, and what had happened.
He found it difficult to talk about his diagnosis with his friends, who couldn’t really understand what he was going through. I was sad to learn that he had also reached out to his doctors to see if they could connect him with a support group, but they weren’t able to help. (Unfortunately, this is something we hear all too often from both men and women facing breast cancer.)
Unwilling to give up, he called the Komen Helpline on a mission: to find a support group where he could speak with other men who have had experiences similar to his.
Rob and I discussed a few nationwide organizations that offer support programs for men, making him feel comfortable – like he could finally meet people who could relate to him. He felt relieved, and was happy to hear that he was welcome to call us back any time with questions or just to talk!
Rob may have been surprised to receive a breast cancer diagnosis, but he was determined to take care of every aspect of his health – an important message for all of us during Men’s Health Month. Being informed about your health, including your risk of breast cancer, is important for men, too. Some warning signs that men should be aware of are described here.
Survival is highest when breast cancer is found early, so please don’t delay if you or a loved one notices a change in the breast or chest area. And remember, no matter how rare a breast cancer diagnosis may be, no man or woman should have to face breast cancer alone.
If you have questions or simply want to talk with someone about breast cancer, please don’t hesitate to call us at 1-877 GO KOMEN (1-877-465-6636).
Guest blog by Kari Wojtanik, PhD, Manager, Evaluation and Outcomes
Treatment of breast cancer has greatly improved due to lessons learned through clinical trials. Thanks to researchers and the bold women and men who are willing to take a chance, for themselves and for the future of breast cancer treatment, clinical trials have allowed researchers to test the safety and benefits of new drugs, diagnostic methods and screening tests. Findings from clinical trials today directly impact patients and dictate the standard of care.
For some patients, like our very own Karen Durham, a member of Komen’s Advocates in Science Steering Committee, clinical trials are an everyday part of life. For more than six years, she has lived with metastatic breast cancer that has been kept at bay thanks to therapies that are being tested in clinical trials. Her participation not only impacts her life, but the lives of others who may someday be diagnosed with this disease.
For Karen and many others, the quality and pace of clinical trials are vital to continuing our progress in the fight against breast cancer.
I recently had a ‘behind-the-scenes’ look at the importance of clinical trials and how they are developed at the bi-annual meetings of the Translational Breast Cancer Research Consortium, more affectionately known as the TBCRC, along with one of my Komen colleagues, Kim Sabelko.
The TBCRC is a group of 17 cancer hospitals and research centers across 15 states that conduct innovative breast cancer clinical trials. It consists of oncologists, surgeons, radiation oncologists, scientists, statisticians, study coordinators, and patient advocates – all of whom provide input into the development of every trial run through the TBCRC. Komen is one of three key sponsors of the TBCRC, providing $10 million since 2007 in support of this unique group.
The goals of the TBCRC are to speed completion of clinical trials, share data and ultimately provide real impact for women and men with breast cancer.
During the TBCRC meeting, I not only learned about the great progress TBCRC clinical trials have made, but also about the issues and challenges faced by those conducting the trials. And it’s no surprise: it takes a village to conduct a trial!
Cooperation among a diverse group of experts, from researchers to advocates, with an equally diverse set of resources, is crucial for conducting a clinical trial. People, time, money, medical supplies, support systems, and a clear plan for completing the trial are all part of the clinical research infrastructure. But coordinating all of these components can be a daunting task for a single hospital or cancer center.
That’s where the TBCRC comes in. The TBCRC provides the infrastructure needed to help its members conduct meaningful, successful clinical trials across multiple institutions that other groups or institutions may not be able to.
One example of this is a TBCRC trial on male breast cancer. Because male breast cancer is not common, finding enough patients at a single, or even a few institutions, to adequately power a clinical trial can be near impossible. By having 17 institutions across the country, the TBCRC can provide the infrastructure needed for the trial, and more patients can be accrued, strengthening results.
Any researcher would agree: clinical trials are becoming much more challenging in terms of data collection and recruiting eligible patients. As a result, many trials can either be too intensive or too large, or have too few eligible patients, for a single institution to conduct. Because TBCRC organizations work together, trials conducted through the consortium take place across several institutions, instead of just one, increasing the power of the trial results.
“The TBCRC fills a space in the breast cancer world that was entirely vacant, and with the decline in federal funding, work done by the TBCRC is more important than ever,” says Eric Winer, MD, one of the founders of the TBCRC and a member of the Steering Committee, as well as Komen’s Chief Scientific Advisor. “And you can’t underestimate the importance of bringing investigators together from across the country to discuss new and ongoing trials,” Winer adds.
All TBCRC clinical trials are driven by the most pressing questions in breast cancer. Attendees work together to make sure that the trials conducted through the TBCRC will answer important questions, successfully recruit patients, and are designed to get meaningful results. They are not dictated by the interests of the biotech or pharmaceutical industry. This is possible thanks to support from various sources, including Komen.
The TBCRC also serves as a training ground for next generation of breast cancer clinical researchers. As funding for cooperative and other groups dwindles, opportunities for researchers to conduct trials also diminish.
“Today, younger investigators have fewer opportunities than ever to propose new concepts and successfully test them in clinical trials. The TBCRC offers them a safe harbor where their ideas receive early input from more experienced investigators, thereby increasing the chances of successfully completing studies that could influence routine clinical practice and serve as the foundation for larger scale clinical trials,” says Antonio Wolff, MD, TBCRC Executive Officer and a member of its Steering Committee, and a Komen Scholar. Wolff emphasizes, “The opportunity to be a part of a successful team early on is critical to ensure that the brightest and most productive minds continue a career in breast cancer research.”
One of the highlights of the TBCRC meeting was when a medical oncologist from the University of Michigan approached Kim and me to say, “Thank you.” She conveyed the importance of organizations like Komen in supporting the TBCRC, and passed on the sentiments of her patients, who appreciated participating in a TBCRC trial that is supported by an organization they know and trust.
We’re proud to support the TBCRC, as its members work to accelerate the clinical trials process and change the way many women and men with breast cancer are treated in the future.
Stayed tuned for future updates on the TBCRC and results from TBCRC trials.
At Susan G. Komen, we celebrate those who have faced breast cancer every day of the year. But today, the 28th annual National Cancer Survivors Day, got us thinking about everyone who has ever had their world turned upside down by the words, “You have breast cancer.”
Here are eight things we want to make sure you know today, and every day:
In fact, you’re in the company of more than 3 million breast cancer survivors just in the United States! And millions of family members and friends who have gone to appointments, cleaned, babysat, cooked, carpooled and so much more while their loved one faced breast cancer. Spread some love today to those who were by your side as you faced breast cancer, and if you start to feel discouraged, check out these powerful stories from women and men who have been right where you are.
2. Life Is Different Now, and That’s OK
Breast cancer survivor and Executive Director of Komen Greater Atlanta, Cati Stone, said it best in one of our recent blogs: “People think it’s ‘life as usual’ after breast cancer. But it’s not.” You’re not the same person you once were. You may have a new appreciation for life or a surprising ability to not sweat the small stuff. You may also need time to recover physically and emotionally, so don’t feel like you have to jump back into all of your activities right away.
3. That Lingering Fear…
… of a breast cancer recurrence is totally normal. After breast cancer treatment ends, many people are afraid they still have cancer or that it will come back. The truth is, breast cancer can recur at the original site, as well as spread to other parts of the body. That’s why it’s critical to visit your health care provider on a regular basis following treatment. There are also certain steps you can take to reduce your risk of a recurrence (#4).
Maintaining a healthy weight, eating a balanced diet and getting regular exercise may help reduce your risk of a breast cancer recurrence. One analysis found that breast cancer survivors who got roughly three or more hours of moderate-paced walking a week had a 30 percent lower risk of death (from any cause) compared to less active survivors!
5. For Many, Cancer is the New Reality
Women and men living with metastatic breast cancer don’t have the same treatment options as those who are diagnosed with early-stage disease. For many, the main goals of treatment are to control tumor growth and extend life, while trying not to compromise their quality of life. Metastatic patients need more: more support, more research, more awareness. To date, Komen has invested more than $133 million in over 350 research grants and clinical trials on metastatic breast cancer to understand the biology and find new treatments, while working with the Metastatic Breast Cancer Alliance and the Health of Women [HOW] Study to improve the lives of those with metastatic disease.
6. There’s Always Something New to Learn
There’s a reason people say, “Knowledge is power.” By being thoroughly educated about your diagnosis, treatment and follow-up care, you can feel more in control of your life again. So, the next time you’re heading for an appointment with your physician, grab a pen and paper and consider asking some of these questions about survivorship.
7. It’s OK to Ask for Help
Your journey with breast cancer may have brought with it a whirlwind of emotions – shock, fear, denial, sadness, anger. Thinking about insurance, finances or finding services can be overwhelming. That’s why there are programs and organizations that offer resources, support and guidance. And it’s OK to ask for help. Says one fellow survivor: “I learned that if I took a hand offered to me, there was no telling what gifts I would receive.”
This organization was founded more than 30 years ago on a promise between two sisters. That’s now the promise we make to you and to the world – to end breast cancer, forever. We’re working each and every day to fulfill that mission, in laboratories and in communities around the globe. And every time you lace up your sneakers to Race for the Cure (or put on a pink tie, or bake pink cupcakes or support our partners), you’re making that work possible. Learn how you can support Komen in your neighborhood and join us online to celebrate survivors today and every day!