I recently attended the final C4YW, the Conference for Young Women Affected by Breast Cancer. This amazing conference has been organized by Living Beyond Breast Cancer (LBBC) and the Young Survival Coalition (YSC) for 13 years. Since 2008, Susan G. Komen has provided sustained support as Lead Sponsor by funding the travel scholarship program. Over the years Komen funding has helped over 2,200 young survivors attend the conference.
The conference offered a variety of scientific and quality of life issues that uniquely face young survivors such as family planning options, breast reconstruction, talking to your children about your diagnosis and balancing career, family and treatment. There were also many opportunities for networking and time to have fun including the Saturday night dance party or Sunday morning Party in Pink Zumba event.
Komen had a vibrant presence throughout the conference. Our Chief Mission Officer, Chandini Portteus, offered an overview of Komen’s commitment to young women ranging from research to the work of our Komen Scholars and our partnership with Zumba. In the exhibit hall, Komen Affiliate members from Central Florida and Philadelphia joined with headquarters’ staff to provide fun and educational materials. Additionally, attendees included members and constituents of several Komen Affiliates and at least two Advocates in Science members.
Attendees Gwendolyn and Tanya came by the Komen booth Friday afternoon. Watching the two of them, I assumed they were life-long friends or maybe even sisters. When I asked how they knew each other, they shared their story, at times speaking in unison, at others speaking over each other to make sure I was getting the most salient points. Gwendolyn and Tanya met at C4YW in 2008. Recipients of Komen travel scholarships, they arranged to share a hotel room through the C4YW travel board. They became fast friends and have attended the conference together ever since. Their friendship transcends cancer and C4YW – they speak on the phone and have visited each other’s homes in different cities. This year, it was especially important for the two women reunite at C4YW because Tanya recently found out that her cancer returned and metastasized. Telling their story, Gwendolyn and Tanya laughed, cried, and laughed some more.
This has always been the essence of C4YW and one of the reasons that I am so proud that Komen supported the conference for the past six years. First year attendees are often heartbroken by their diagnoses, overwhelmed by the information and often hesitant because it seems oxymoronic to enjoy a conference about breast cancer. There are tears, and there is anger at the injustice of a diagnosis of breast cancer so early in life, but there is also joy. My wish is that all of the attendees at this year’s C4YW were cleansed by their tears, embraced their joy and turned their anger into passionate advocacy for themselves and others like them. And I hope that every attendee at C4YW found her Tanya or her Gwendolyn – a true friend, a supporter who understands what she is going through and a hand to hold while navigating the journey.
For many years, we thought of breast cancer as a single disease whose severity was once measured by the size of the lump. Millions of dollars in research later, we know better. Breast cancer isn’t one disease as we once thought, but a family of diseases – some aggressive, some advanced, some deadly – and all requiring our best efforts to treat and cure.
One of those aggressive forms is triple negative breast cancer. It may surprise you to know that triple negative breast cancer wasn’t officially recognized as a distinct type of breast cancer until 2006 – less than a decade ago. It is a form that disproportionately affects young women, women with BRCA mutations and black and Hispanic women. It is also more likely to spread to other parts of the body than other types of breast cancer. It accounts for only about 15% of all breast cancer cases, but roughly 25% of breast cancer deaths.
The term “triple negative breast cancer” (TNBC) sounds more specific than it really is. In fact, TNBC is really defined by what the tumor is NOT. These tumors lack the receptors – estrogen (ER), progesterone (PR), and human epidermal growth factor 2 (HER2) – that drive the majority of breast cancers. The absence of these receptors means that TNBC tumors are unlikely to respond to therapies that target these three receptors, including hormone therapies like tamoxifen and HER2-targeted therapies like trastuzumab (Herceptin). There are no targeted therapy options for TNBC patients, and cytotoxic chemotherapy (therapy that kills both normal and cancerous cells) is the standard of care.
There is an urgent need to find specific, targeted therapies for TNBC. This is why Susan G. Komen has invested more than $74 million in over 100 research grants focused on this breast cancer subtype to change the landscape for these patients.
In 2009, Komen and the Triple Negative Breast Cancer Foundation announced a partnership to confront triple-negative disease head on: pledging a total of $6.4 million over five years to fund research to support the discovery of new TNBC treatments. Read more about how Promise Grant recipient Dr. Andres Forero is using these funds to expand treatment options for TNBC patients.
Another groundbreaking project, led by Komen Scholar Dr. Jennifer Pietenpol and funded by Komen and the Milburn Foundation, led Dr. Pietenpol and her team to identify six different subtypes of TNBC. Collaborating with researchers at MD Anderson Cancer Center, the Pietenpol group analyzed how the newly-discovered TNBC subtypes responded to different chemotherapy regimens, finding that response rates to treatment varied substantially by subtype. Identifying these subtypes could potentially lead to better outcomes for individuals with TNBC.
Dr. Pietenpol’s team is committed to learning more about TNBC and expanding knowledge and treatment options for patients who are diagnosed with this aggressive breast cancer. They have developed a web-based tool that can help other researchers determine TNBC subtypes in their own samples.
This year, they will oversee two clinical trials that will test new, targeted treatments for the TNBC subtypes – the first of their kind to assign treatment to TNBC patients based on a predictive biomarker test.
Today, March 3, marks the second annual Triple Negative Breast Cancer Day – a national day of awareness and grassroots fundraising efforts, organized by the Triple Negative Breast Cancer Foundation, to help eradicate triple negative breast cancers and assist those impacted by the disease. Komen is pleased to be partnering with Triple Negative Breast Cancer Foundation to support TNBC research and all individuals facing TNBC.
The work we have achieved – both individually and together – is leading the way to better treatments, and ultimately, more lives saved from this terrible disease.
Help invest in the future of triple negative breast cancer research by showing your support today.
More about TNBC:
On Wednesday, February 26, representatives from Susan G. Komen and GE took to the stage at the 2014 Social Capital Conference to champion one of Komen’s most important partnerships. Social Capital 2014 brings together the brightest nonprofit and corporate minds for a candid exchange on growing strategic partnerships: from philanthropic investments to web-centric cause campaigns, to employee and consumer engagement.
Adine Zornow, Director, Development for Susan G. Komen, and Alan Gilbert, Director of Government and NGO Strategy for GE healthymagination, represented the collaboration at the conference and discussed the necessity of strategic alignment for collaborations such as the partnership Komen and GE launched in September of 2011, as part of GE’s $1 billion commitment to ending cancer, starting with breast cancer. GE has invested more than $5 million into this innovative, three-year partnership which aims to improve access, affordability and quality breast care for women around the world, focusing on four key areas: providing education, outreach and free breast cancer services in Wyoming (through Wyoming Women First); raising awareness of the importance of breast cancer screenings, diagnosis, treatment, and survivorship care in China; increasing public awareness of breast cancer and screenings in the Kingdom of Saudi Arabia; and through Komen’s inaugural Global Women’s Cancer Summit held in Washington, D.C. on February 4, 2013.
Zornow and Gilbert were joined by representatives from other public-private partnerships including Subaru & ASPCA and Brawny & The Wounded Warrior Project. The panel discussion titled “Evolution of Great Partnerships” allowed the diverse panel representatives to discuss how their partnerships formed, what has been successful through the collaborations and what challenges have arisen and how have they overcome them.
“It was wonderful to showcase Komen’s work and collaboration with an industry and thought leader such as GE and our impactful partnership in such places like Wyoming, Saudi Arabia and China to reach our shared goals for breast health.” – Adine Zornow, Director, Development, Susan G. Komen
Learn more about how Komen and GE are making a global impact in the fight against breast cancer.
As a surgeon, I’ve been involved in breast care for more than fifteen years; it has been a most rewarding part of my career. I also have the great pleasure of being the Physician Lead for the Komen Accelerating Breast Cancer Diagnosis (ABCD) Project in Washington, DC. This project is a collaboration of Providence Hospital and Unity Health Care, and seeks to improve breast care for women, particularly those from lower socio-economic communities.
Areas of D.C. and neighboring Prince George’s County, MD have extraordinarily high death rates from breast cancer, despite relatively high screening rates. One of the reasons is that women face a hodge-podge of providers, accepting different insurance at different institutions for different procedures. Precious time and vital information is too often lost as patients and providers try to maneuver the maze our health care system has become.
Not so for one of my most recent patients, who I’ll call Theresa. I’ve never seen the health care system work as quickly as it did for her. Theresa is a 51-year-old African-American woman who never got regular mammograms–she did not have a family history of the disease, her medical insurance lapsed as she changed jobs, and it simply wasn’t a priority. Then, one day, she felt an unusual lump. Read more
Guest post by Cheryl Perkins, Ford Model of Courage
May 2003: Clean bill of health from my doctor. October 2003: I found an almond-sized lump in my right breast. After two weeks of thinking that it might be a clogged milk duct due to breast feeding, my doctor scheduled a mammogram which later turned into an ultrasound and biopsy – all in the same day. “Invasive ductal carcinoma, stage 2B and triple negative. It’s a very aggressive breast cancer and we need to act fast.” What a shocker! In that one moment, my life was changed forever.
At the time, my children were aged 11, 9, 4 and 2. I had just finished nursing school and had started my orientation as a NICU nurse at Children’s Hospital in Detroit. That week I met with the oncologist and the surgeon. I had a battery of tests, scans, classes and I bought a wig. I started chemotherapy the following week which lasted six months. This was followed by a double mastectomy, reconstruction and radiation. September 2004: I was able to go back to work as a labor and delivery RN.
The hard part was over, or so I thought. The whirlwind year of ups and downs left me feeling uncertain of what to do next. For years, I think I just waited for the shoe to drop, to hear that I’d had a recurrence. I prayed that I would be around for my children and husband. Somehow, I kept pressing on getting back to a new normal. My children are now 21, 19, 14 and 12 and my oldest will graduate from Spelman College in May. I am so thankful for the blessing of days that turn into years which mean more time with my family. Unfortunately, the stressors of a cancer diagnosis can change people. You are never the same after battling cancer. My marriage of 22 years was a casualty.
What makes one person survive when so many lose the battle, I don’t know, but I am thankful for the opportunity to share my story. Ford, a longtime Susan G. Komen Race for the Cure sponsor, gave me an opportunity to share my story as a Ford Warriors in Pink Model of Courage. As a Ford Model of Courage, I have shared my story through print, social media and television as a way to encourage other men and women who are battling breast cancer and those who need an extra push to empower them to take control of their bodies. If something does not feel right, do not sit on it. Get it checked out. I am alive because I did not stop with the initial diagnoses of a clogged milk duct. I have learned to embrace the new me.