Blog by Jacqueline McKnight, Scientific Programs Specialist at Susan G. Komen
Metastatic breast cancer (MBC), or Stage IV breast cancer, is different from early-stage breast cancers because it cannot be cured.
People living with MBC transition from one treatment to a new treatment for the rest of their lives. Metastatic Breast Cancer Network (MBCN) President, Shirley Mertz, wants that to change. Her mantra, “Scan > Treat > Repeat: Stage IV Needs More” was printed on t-shirts, rally towels and power point slides at the Komen-supported MBCN 8th National Conference. Advocacy was a major theme of the meeting: personal advocacy, patient advocacy and political advocacy were all highly encouraged.
During the opening session, women and men living with MBC were asked to stand and then sit down as the years that had passed since their diagnoses were read aloud. Those standing the longest had been living with the disease for 16 and 17 years. Approximately 75 percent of the attendees had never been to a MBCN meeting. Many had never spoken to anyone else who lives with the disease. Learning that people can live and thrive with MBC was a powerful and emotional experience.
Speakers shared their stories and offered advice. Cathy Spencer, a former car salesperson turned poet who didn’t think she would live to see her 50th birthday, received resounding applause when she said, “I’ve stopped living the life I had planned and am now living the life that is waiting for me.” Participants laughed together watching a video called “Dumb Things People Say to people living with Metastatic Breast Cancer,” cried together listening to survivor stories, and found encouragement during networking times relating to and understanding the journeys of their peers.
The information provided by experts at this meeting included Komen Scholars Drs. Elizabeth (Claire) Dees and Lisa Carey, along with Brinker Award Winner Hyman Muss. These experts spoke on a variety of topics from clinical trials to the latest treatments to how to speak with your children. The sessions were not only of the highest caliber, but actionable and useful to attendees.
It was my pleasure to represent Susan G. Komen at this impactful meeting. Some people living with MBC feel lost at Susan G. Komen events, overwhelmed by the pink and by messages of survivorship. Some question if they are welcome or belong anywhere in the continuum of Komen’s support network. Many don’t know about all of the services, research and conference support that we invest for those living with MBC.
Komen honors the memory of its namesake and all those who have been lost to MBC by providing travel scholarships to this conference for those who now live with MBC in the hopes of reducing their isolation and building knowledge about the medical advances that help people live longer with MBC. There is a place at Komen for those living with MBC and I am honored to have been among those who shared that message at the MBCN 8th National Conference!
Guest post by Komen Virginia Blue Ridge Affiliate
Like many Susan G. Komen Affiliates, Komen Virginia Blue Ridge is driven by the vast need for funding within our service area. Our goal being to fulfill Komen’s mission – to save lives and end breast cancer forever – a principle that we continue to be reminded of annually, as the call for grant funding produces an increasing amount of requests each year.
In 2014 alone, we were able to fund less than half of the requests we received, even though all organizations possessed worthwhile goals and were more than deserving of our support. After observing this steady increase in requests, our Board and staff quickly realized more needed to be done within our community in order attain our mission-related goals and maximize fundraising potential.
After seeing great success with our Race for the Cure®, yet remaining flat in revenue, the idea for the Pink Promise Luncheon was born. From the start we had lofty goals for our inaugural event – a unique location, fantastic speaker, wonderful food, extensive guest list, and dedication to our goal of raising awareness and funding for Susan G. Komen®.
From the beginning, the outpouring of support for our event within the Virginia Blue Ridge Community was truly humbling, with many individuals and business owners rallying together for the cause. A local venue donated the event space. Kroger donated all of the flowers and centerpieces. A caterer (whose mother was a survivor) prepared the meal at cost. We filled the venue to capacity with 400 guests and acquired over $20,000 in new sponsorship.
Outreach for the event was a true grassroots effort. Our community was extremely fortunate to be able to welcome Komen President and CEO, Dr. Judy Salerno, who paid a special visit to our Affiliate and served as a guest speaker at the event. We were also honored to welcome husband of local survivor and author Dick Wall, who spoke about his wife Carol Wall’s journey through life and her experience with breast cancer.
The entire event was focused on the Promise – with each guest being asked to write a promise to themselves that we plan to mail to them in three months as a reminder. Each guest also received a copy of Nancy Brinker’s book “Promise Me,” and we had the honor of hearing Dr. Judy Salerno speak about the Promise Renewed – Komen’s Principles and Priorities.
The luncheon, which was filled with hope and inspiration, left our 400 guests in awe with many expressing the importance of our story, the work done within the community and our mission. The Virginia Blue Ridge Affiliate covers a large rural area with a medically underserved population. There are many disparities in our region including high rates of poverty and unemployment. It is with this in mind that we work so hard to fund local programs to provide screening and diagnostic mammograms, education and treatment to our uninsured and underinsured neighbors. Many attendees also expressed their renewed sense of urgency in getting regular mammograms, but also making sure those around them do as well.
We have already started brainstorming ideas for next year’s Second Annual Pink Promise luncheon, in hopes to continue to leverage this opportunity to share our message and move the mission forward.
Blog by Eric Brinker, Susan G. Komen Global Ambassador & Volunteer
On October 5, I joined thousands of women and men in Puerto Rico for an unforgettable experience at the 10th annual Komen Puerto Rico Race for the Cure.
Having been part of the Susan G. Komen organization since I was 5 years old, I have seen a lot of Races and breast cancer awareness events in my life… but there was something very different about this one. Just like my aunt Suzy, the event was full of life and incredible passion. You hear about the energy and passion of people in Puerto Rico, but until you are there in person and experience it for yourself, you can’t quite understand! People at the Race were not just participants. They were part of the fight – involved and engaged all day. My aunt Suzy’s spirit was shining through, joining us on this special 10th anniversary Race day.
I am overwhelmed with pride on how the Puerto Rican community has honored my aunt Suzy’s name and legacy. Approximately 14,000 people laced up their sneakers to join us on October 5th for a celebration of life – an event where families come out to honor those who have lost their fight and celebrate the hundreds of women who are proud and thriving survivors. The survivors were the heart and soul, the celebrities, of this event, never letting us forget why we Race for the Cure in the first place.
One of the survivors I had the privilege to meet was Iris Rodriguez – an amazingly strong woman whose treatment was funded in part through a grant from Komen Puerto Rico. Iris shared what gives her strength to keep on fighting in this amazing video which kept with the Race’s boxing theme and featured Hall of Fame boxers Oscar de la Hoya and Miguel Cotto. Iris, who is 51 years old, invited everyone to “join her corner” as she fights for time
with her family and the opportunity to see her grandchildren grow up. What a beautiful project made possible by the Affiliate’s strong partnership with JWT and their committed team!
I’m so incredibly proud of the massive impact Komen Puerto Rico has had in the local community. Just this year, Komen Puerto Rico announced 21 grant programs covering every single municipality on the island, helping underserved women get the screening, treatment and support services they so desperately need. I was honored to meet some of these grantee organizations at the Race, and it was wonderful to see participants have the chance to meet them as well.
Komen Puerto Rico is also taking the lead in convening members of the medical community, the government and local patients to openly discuss the issues in care and work towards the changes needed to help save more lives. Their innovative Banderas program establishes strong partnerships, not only with corporations, but also with schools, government agencies, associations and other entities who have joined together to fight against breast cancer.
The Puerto Rican community has come together to inspire the change they hope to see, and to solve the problems they are facing. That spirit embodies the meaning of my aunt’s life.
I’d like to thank Komen Puerto Rico for this experience, which made me feel personally energized to double down my commitment to help and continue the work we do.
Thanks to your strong Board of Directors, amazing staff, passionate volunteers and partners and a community willing to join in and participate. You have the recipe to save lives and make a difference in Puerto Rico.
Guest Blog by Komen Chief Scientific Advisor Dr. George Sledge, Jr., MD. Dr. Sledge is a Professor of Medicine and Pathology, and Chief of the Division of Oncology in the Department of Medicine at Stanford University.
As a physician and cancer researcher I am often asked, “when will we find a cure for breast cancer?” The answer is complicated, in part because of what we have learned over the last decade or so: breast cancer is not one disease, but many, and as such will require not one cure, but many.
Are we making progress towards the “cures” of breast cancer? I believe so, though there is much work to be done. In the clinic, we deal with three basic types of breast cancer: one dominated by the presence of the estrogen receptor (hence, estrogen-driven in terms of its growth), one whose growth is driven by the growth factor receptor HER2, and one where HER2 and ER are absent (which we often call “triple negative”, because it lacks the progesterone receptor as well).
Estrogen receptor positive breast cancer was the first human cancer where we had targeted therapy, in the form of drugs that remove estrogen or prevent estrogen binding to its receptor. These drugs clearly reduce the risk of recurrence in early stage, estrogen receptor-positive breast cancer patients, but they do not cure everyone with this type of breast cancer. In the past decade we have learned much about how breast cancers become resistant to estrogen-targeting drugs, and this has led to new drugs to thwart resistance. The first of these, everolimus, recently entered clinical care, and others are rapidly being developed. For instance, we know that estrogen drives growth through something called CDK4/6, and early studies suggest that blocking CDK 4/6 significantly lengthen the time patients with advanced breast cancer remain in remission.
HER2-positive breast cancers are the second major “family” of breast cancers for which we have developed targeted therapies. HER2-targeting drugs entered clinical practice with the use of the antibody trastuzumab, initially for advanced breast cancers, but during the last decade for early stage breast cancers as well. HER2-positive breast cancers have gone from being the most feared to being among the most treatable. New HER2-targeting drugs have joined our treatment tool kit in the past three years, and we are already seeing impressive evidence that these drugs improve survival for patients with advanced disease. Several of these drugs (pertuzumab, T-DM1 and neratinib) are now being tested for early stage breast cancer, and the hope (I think a realistic hope) is that these new drugs will largely eliminate HER2-positive breast cancer as public health problem.
The third group of breast cancers, so-called “triple negative breast cancer”, has proved the most intractable. While the combination of local therapies (surgery and radiation) and adjuvant chemotherapy cure many of the women with this disease, the picture for patients with advanced (or metastatic) disease remains daunting. While we have many chemotherapy agents for women with advanced disease, these drugs are toxic and eventually fail to control the disease.
Several new approaches to triple negative breast cancer are being tried. For instance, women with BRCA1 mutations (most of whom have triple negative disease) appear to be more sensitive to drugs that interfere with DNA repair, and several of these are being tested. In addition, new approaches that involve interfering with the metabolism of these drugs, as well as novel approaches that make use of the body’s immune system, are now underway.
Many of these new approaches represent small steps in the right direction. Will they collectively result in a “great leap” forward towards our goal of a cure for breast cancer? Only time will tell, but I am optimistic that we will continue to improve the fate of women with the disease, through the efforts of a dedicated army of breast cancer researchers. Komen researchers have been at the forefront of many of the major advances in breast cancer research, both in understanding the biology of the disease, and applying this knowledge to the clinic.
Ultimately, of course, part of the cure should involve preventing, as opposed to treating, breast cancer. This has also been an exciting research area, and one that Komen has invested a great deal of resources in. We could give no greater gift to our children than using novel prevention approaches to consign breast cancer to the dustbin of medical history.
Guest blog by Marissa Fors, Susan G. Komen Helpline Specialist.
I’ve been working on the Susan G Komen® breast care helpline for many years now. I have been blessed with the opportunity to speak with women and men that have been touched by breast cancer, and more often than not, I learn from them just as much as they learn from me. Many callers are wiser and stronger than they know. It is such a beautiful experience to be able to witness someone realizes this as they share their unique experiences with the disease. My callers remind me of this daily, but it is one caller in particular, Gloria, that has touched my heart deeply with her strength, wisdom and honesty.
Gloria has experienced more loss in the past year than I could ever imagine. She was diagnosed with breast cancer and underwent a mastectomy, and at the time I spoke with her she was undergoing chemotherapy. She expressed the sorrow she felt when she lost her breast after surgery, and now, her hair from the chemo. But most of all, she is mourning the loss of her identity and her independence; side effects of treatment no doctor could prepare her for.
After her own diagnosis of breast cancer, Gloria lost her best friend to the same disease. Her best friend and “bosom buddy,” as they occasionally joked, were inseparable most of their lives. They never imagined that they would share a breast cancer diagnosis, but they were each others biggest supporters and allies in the best and worst of times.
When Gloria found the number to the Susan G. Komen Breast Care Helpline, she was depressed, felt a sense of isolation and loneliness, and expressed a profound survivor’s guilt. Her emotions were overwhelming and she needed a safe way to express these feelings. She was going through so much and didn’t know how to cope. I was able to provide her with the support she needed, and together, we discovered the strength she never knew she had. It takes an incredibly strong person to ask for and accept help. Realizing this gave her a sense of empowerment and comfort.
After realizing her own inner strengths, she also reflected on her small victories and sources of joy that provided inspiration in the darkest of times. She found happiness and light from her new nephew that was born around the same time she was diagnosed with cancer. Her dog, a seven year old golden retriever, showed his love in unexpected and unconventional ways. She looks forward to playing with both her nephew and her dog, and believes they are both small miracles in her journey through diagnosis, treatment and recovery.
At the end of our conversation, I learned a lot about perseverance from Gloria. She ended the call stating that she was having a bad day, and expects to have some more bad days down the line, but feels more equipped with the power to cope and manage these emotions in different ways. She reflected:
“Sometimes strength comes from the most unlikely of places. Sometimes you have to search high and low, climb mountains and overcome the scariest of obstacles to find it. And sometimes it has been sitting in your lap all along.”
Gloria expressed her profound gratitude to have the opportunity to be completely open and honest about her experience with being diagnosed with breast cancer. I have to say, I am also grateful for her, and for the powerful words she shared with me.
It is an honor to be part of the Komen Helpline and to be able to speak with and provide support to people nationwide. It is a unique and rewarding experience and, it is times like this that make me so proud to be a Helpline Specialist.
If you, or your loved one, have any questions about breast cancer, you can give us a call at 1-877 GO KOMEN (1-877-465-6636).