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  • Taking Metastatic Disease off the Backburner

    Nikki Panico and her mom

    By Nikki Panico, Executive Director of Komen Southeast Wisconsin

    No one wants to talk about it. No one wants to be diagnosed with it. The reality is that those diagnosed with metastatic breast cancer are forever fighting.

    Long before I started working for Komen Southeast Wisconsin, I watched my mom and aunt battle metastatic breast cancer, and lose their fights. I remember how bewildered and confused my sisters and I were about the diagnosis, treatment options, insurance constraints, and the emotional journey they were going through. We would have found so much benefit from an open forum that discussed these issues.

    There is a lot of talk about screening and early detection, with the hope of one day being called a survivor. However, many will battle breast cancer until the end. They need to know that their issues and needs are a priority for Komen.

    Earlier this year, our team at Komen Southeast Wisconsin set out to build new relationships with patients who felt they had been forgotten. We teamed up with GE Healthcare to host a Metastatic Breast Cancer Symposium to get the ball rolling – offering basic science, clinical and survivorship information related to metastatic breast cancer.

    The event gave Drs. Ian Krop and Danny Welch, two of our Komen Scholars (some of the top researchers in the world) and advocates to share their latest findings. It also allowed people in our community, who participate in the Race and other events, to see where Komen research dollars are being used.

    Over 100 people attended, including those with metastatic breast cancer, as well as nurses and other healthcare professionals who actively care for these patients.

    The event created new opportunities for researchers and patients alike, with Komen Scholar Dr. Danny Welch (University of Kansas Cancer Center) sharing that he made new friends who offered insights he has already brought back to his lab.

    Another important voice in metastatic breast cancer was in attendance: Komen advocate and President of the Metastatic Breast Cancer Network, Shirley Mertz, who has been living with metastatic disease since 2003. Shirley encouraged our team’s hard work, saying, “We often put screening and early detection at the forefront, while this more difficult subject may be put on the backburner. This symposium will start to change that outlook.”

    Other attendees shared their own experiences. One woman – a member of our Komen SE Wisconsin Board – was amazed to discover she was on a drug that one of the Komen Scholars helped to create! Another shared how the research presented gave her a sense of confidence in her doctor as well as her treatments.

    Their words confirmed that this is an event from which the Milwaukee community, and the breast cancer community, can benefit.

    It wasn’t all that long ago that society wasn’t even comfortable saying the word “breast.” Sometimes it takes an open forum and a committed mission to break down those barriers. I’m proud to be a part of an organization – and a wonderful team – who are focused on every person who is diagnosed with breast cancer.

  • How Can Molecular Imaging Be Used to Improve Breast Cancer Treatment?

    By Komen Scholar Dr. David A. Mankoff, Chief of Nuclear Medicine and Clinical Molecular Imaging, Director of the PET Center, Professor at the Perelman School of Medicine, University of Pennsylvania

    Advances in medical research can have positive effects that spread beyond the initial project’s focus. In breast cancer research, new technologies and discoveries have often brought scientists and doctors from different specialties together to advance breast cancer prevention, detection and treatment.

    An ongoing trial at Penn by Dr. Amy Clark and Dr. Camilla Lynch is investigating the use of 18F-fluorodeoxyglucose (FDG) PET/CT to measure early response to treatment for patients with breast cancer bone metastases. A dramatic decrease in FDG uptake in the spine (right panels; PET and CT/PET fusion image) shows that response can be measured as early as 4 weeks into treatment. By standard, bone metastasis response can be challenging to measure, even after months of treatment.

    In the not-too-distant future, I foresee the day that molecular imaging becomes a key tool used together with targeted breast cancer therapies.

    What is molecular imaging? Molecular imaging differs from traditional imaging methods, like mammography or X-rays, in that it does not simply image tissue, bones or organs; it can image what’s happening inside cells at the molecular level.

    Molecular imaging relies on the use of probes to help image particular targets or biological processes. Molecular imaging probes interact chemically with their targets and in turn allow those targets to be visualized with various imaging techniques like PET or MRI.

    At the University of Pennsylvania, we are using PET to create three-dimensional images of the breast during breast cancer treatment. PET images can allow us to see and measure changes, such as cancer growth, in breast tissue. They may also offer the potential to guide treatments and help doctors and patients identify which therapy is most likely to be effective. Doctors can then decide which therapies can be stopped earlier, potentially avoiding unnecessary side effects.

    In 2014, thanks to funding from Susan G. Komen, we launched our new Breast Cancer Molecular Imaging Program at the University of Pennsylvania. This new program is special for a couple of reasons. First, it is one of only a handful in the U.S. Second, it brings together faculty specialists and key staff with experience in molecular imaging, breast imaging, oncology, breast surgery, clinical imaging study design and data analysis.

    We work together to move cutting edge breast cancer imaging research to patients in the clinic. Currently, the program supports three ongoing clinical trials and two clinical trials in advanced stages of development. In addition, two basic science research projects are also supported by the program.

    At the same time, we train and mentor junior faculty in breast cancer imaging. So far, we have recruited four junior and one mid-level faculty to this important area of research.

    Collaborative meeting of the Molecular Breast Cancer Imaging group during a presentation from a cardiologist interested in using molecular imaging to identify cardiac toxicity of drugs used for breast cancer treatment, with the goal of early detection and management of toxicity.

    The Komen-funded program has also produced a “ripple effect” across the University.  Researchers in this program have had opportunities to obtain additional funding for imaging research and clinical trials.

    A major success of the Komen-funded project was our ability to receive a competitive award for a two-year Department of Energy (DOE) grant for $1 million. The DOE award is focused on breast cancer molecular imaging and is one of only five DOE Centers awarded across the US and the only to focus on breast cancer. This would not have been possible without the Komen Scholar Grant support.

    I have been a Komen Scholar for a year and a half and can attest to the important role Komen funds play in research around the globe, here in Philadelphia and right in my own laboratory.

    Whether its molecular imaging or other areas of cutting edge research, our continued progress against breast cancer depends on organizations like Komen.

  • When Running to the Store Feels Like Running a Marathon – Offering Help and Support for People Facing Breast Cancer

    By Jane Levy, LCSW-R, Director of Patient Assistance Programs at CancerCare

    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).

  • Komen at Work in the Kingdom of Saudi Arabia

    By Susan Brown, Managing Director, Health & Mission Program Education and Ana Teasdale, Director, Global Grants & Programs

    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.

  • Frustrated and Looking for Someone Who Understands

    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).