A survivor recently told me, “People think it’s ‘life as usual’ after cancer, but it’s not.” And she’s right! As a five-year breast cancer survivor myself, I understand how nothing seems “usual” after a breast cancer diagnosis.
My own treatment took a year and a half to complete, and I was changed as a result. Facing a diagnosis and undergoing treatment is hard. And when it was over, I still looked like me on the outside (just with less hair from the chemotherapy), but I was undoubtedly no longer the same. Even now, I feel differently about my body and wonder how something so strong could have become so weak. But in the end, my breast cancer experience left me with a new way of living life that has brought unbelievable peace and happiness along with it.
Breast cancer survivors need support for both their emotional and physical health. They may experience long-term treatment complications, and they must live with the risk of cancer recurrence or with the daily trials of metastatic disease. Support services can be limited, especially if you have no insurance.
In our 25+ years of service, Komen Atlanta has enabled more than one million people to access lifesaving breast health education and screenings they could not otherwise afford. But the need in our area is great, with breast cancer mortality and late-stage diagnosis rates that are higher than the national average.
Our most recent Community Needs Assessment showed a great need for better support for the survivors in our community who are still going through treatment, who will be forever fighters of metastatic disease and who have completed their treatment. Many of the survivors we spoke with shared how they had little access to support or wellness services after their active treatment. This is particularly true of survivors who live outside of the core metro area.
Komen Atlanta wants to be on the forefront of survivorship support, and on March 21, 2015, Komen Atlanta and Cancer Treatment Centers of America in Newnan, GA, held Surviving & Thriving in 2015 – our inaugural survivorship conference for breast cancer survivors and co-survivors. The aim of the conference, which was free to all attendees, was to provide resources and tools to help survivors navigate life after breast cancer treatment, while also bringing together a community of support.
More than 100 people attended this celebration, including a diverse group of survivors (both men and women!) and co-survivors (husbands, wives, children, friends and more). Topics included educational and inspirational discussions and presentations, as well as valuable time for attendees to share challenges and triumphs with one another.
It was incredibly touching to watch one attendee, a 25-year survivor, assure a six-week survivor that she was not alone in her feelings of fear. I know from personal experience the unbelievable impact of conversations like these. There is nothing quite like bonding with other survivors. And for many survivors, there are few opportunities to meet and talk with others going through similar struggles.
Surviving & Thriving presentations emphasized the importance of being positive and mindful, finding one’s self after treatment, and living a healthy lifestyle to prevent recurrence. Dr. Anita Johnson (Medical Director of Surgical Oncology at Cancer Treatment Centers of America) and Dr. Neil Spector (Komen Scholar and Associate Professor of Pharmacology & Cancer Biology at Duke University) discussed the future of breast cancer treatment, the evolution of screening and diagnostic and services, and advances in breast cancer treatment.
Knowledge is power, and we want survivors in Atlanta and beyond to be armed with the latest information to empower them to move beyond fear and into control of their own well-being.
Breast cancer survivors are central to Komen Atlanta’s mission. We understand their victories and unique challenges, and we are here for them.
If you plan to be in the Atlanta area, we would love for you to join us May 9th at Lenox Mall for our 25th annual Race for the Cure where we will continue our celebration of survivorship!
I was familiar with breast cancer long before beginning my tenure at Susan G. Komen nearly two years ago. It had already made a lasting impact – both in my experience as a practicing physician and in my personal life. And I can’t help but appreciate what a small world it is that a breast cancer survivor I met years ago is now serving as an inspiration for people across the country.
During my time at the Institute of Medicine (IOM) I met a young woman named Tracy. We had worked together from time to time on several projects related to aging, my field of expertise. Tracy had recently experienced both great sadness and great happiness – losing her mother to ALS, and marrying the man who calls her his “perfect match,” all within a year’s time.
Then, she found a lump.
I remember when she was first diagnosed. I couldn’t believe that this was happening to her and to others on our staff who had also heard, “You have breast cancer…” in a short period of time. It felt like an epidemic.
Tracy insisted on continuing to work full time, despite our encouragement that she take time to rest and heal! I wanted to support her in any and every way possible, but she (like so many breast cancer survivors that I’ve met) was strong and determined to work through her treatment.
One thing she did have a soft spot for was baseball. A passionate Washington Nationals fan, Tracy wanted to maintain some sense of “normalcy” during her treatment, attending games with her husband, and a fun “IOM night” that we hosted at the park. She and I bonded over our love of baseball.
Over the years, we’ve kept in touch, meeting up periodically. I’m always happy when I get to see Tracy, but I was ecstatic when one of our Komen partners, Major League Baseball, announced that this year’s Honorary Bat Girl for the Washington Nationals was none other than Tracy!
She will be recognized on the field and will deliver the lineup card before the Nationals play the Atlanta Braves this weekend, and also plans to join us at the D.C. Race for the Cure! I can’t wait to see Tracy, and celebrate her strength with hundreds of other survivors and baseball fans this weekend.
This is a very heartwarming coincidence for me. But further, it demonstrates the lasting mark that breast cancer leaves on our lives.
Whether you received a breast cancer diagnosis, or supported someone as they prepared for the fight of their life, this disease affects literally all of us.
That is what will be on my mind this weekend as I am reunited with an old friend – we are all in this fight, this mission to end breast cancer, together.
By Sandy Finestone and Karen Durham AIS Steering Committee Members and Komen Scholars
Many patients are willing to put up with a lot if it means a longer-term future. Going through short term nausea and fatigue is an easy sacrifice. Still others are even willing to cope with more severe, lasting side effects – such as heart and nerve damage – if it means more time. For some, however, the promise of even a bit more time – say, two more months – is simply not worth trading in their quality of life.
The patient perspective hasn’t always been top of mind for researchers and drug makers, but more and more, patient advocates like Komen’s Advocates in Science are getting involved in the research process, making sure that patients have a voice.
We had the chance to share our own experiences at a recent meeting on breast cancer drug development hosted by the U.S. Food and Drug Administration (FDA). We were two of the four survivors on the patient-side of the panel (photo), each selected to share our own unique point of view. Kimberly Wright, a fellow AIS Steering Committee member, also attended to offer her support.
This meeting was one of 20 on patient-focused drug development that the FDA has planned. The goal of this meeting was to understand the impact of breast cancer and treatment on our daily life. Additionally, they wanted to hear our thoughts on treatments now available.
We were very anxious, and a little excited, as we drove to the FDA campus for the meeting. After a few wrong turns and much laughter, we made our way to a large meeting room with a podium and two tables on each side – one for the FDA staff and one for the patient presenters.
All of us on the patient-panel had powerful stories to share. Karen spoke as a woman living with metastatic breast cancer. While Sandy spoke not only as a survivor, but also shared her experience of leading support groups for women facing breast cancer.
A third woman spoke about dealing with the psychological impact of her diagnosis. A fourth woman shared how, at the time, she put her breast cancer diagnosis on hold while dealing with more urgent issues in her life until her cancer returned. And now, breast cancer and her treatment are impacting every aspect of her life.
After we had a chance to speak, the FDA panel members asked a lot of detailed questions, such as: If you completed treatment more than six months ago, have your side effects disappeared? Would someone opt out of a treatment because it could cause hair loss? Exactly how does peripheral neuropathy (nerve damage) affect your daily life?
The key message we gave to the FDA panel was clear: patients are willing to bear treatment side effects as long as they are informed about how the treatment may affect them and there is a clear benefit to their survival.
We all felt it was a very productive, satisfying meeting. It was obvious to us that the FDA wanted to hear the patient perspective about treatment, side effects and the willingness to endure those side effects. In fact, some FDA panel members approached Karen during the break and after the meeting to ask her more questions. Another FDA audience member asked Sandy if she would come and speak to his colleagues at another division of the FDA.
All in all, it was a very good meeting, and we are hopeful it will be just the first of many such conversations with the FDA and the advocacy community.
By Susan G. Komen Scientific Grants Managers, Jerome Jourquin, Ph.D. and Jamie Stanford, Ph.D.
Sharing one’s work with the public isn’t always easy for scientists. They can get wrapped up in explaining intricate details about the biology or the thought process behind their research. What gets lost sometimes is the why – Why is this work important? Why will it benefit patients?
Susan G. Komen-funded researcher Dr. Deborah Lannigan, Associate Professor at Vanderbilt University Medical Center (VUMC), is passionate not only about her work, but also making sure the work is understood. She, like many of our Komen-funded researchers, wants the public to know more about the research they support.
Her desire to reach the public led Dr. Lannigan to open her laboratory to visits by breast cancer patient advocates. The Komen Greater Nashville Affiliate and a group of its supporters were among the first visitors who were able to get a firsthand look at ongoing Komen-funded breast cancer research.
As they toured the lab, Dr. Lannigan discussed a new technology that she is using to find genes that cause triple negative breast cancer (TNBC) – one of the most aggressive forms of the disease. She and her team will use this information to develop specific targeted therapies, which are currently unavailable for TNBC.
Dr. Lannigan and her graduate students also took time to show their visitors how they grow human breast tissue in the lab, explaining the many pieces of equipment they use to conduct their daily work. The tissue they grow is used to identify and test new drugs, even combinations of drugs, prior to testing in people. She explained that her studies could help doctors find the best treatment for each individual patient – known as “precision medicine” – which could improve the chance of survival.
“What resonated with me was that the money we raise here locally in Nashville [is]
being invested in high level research, like at Vanderbilt, right down the road”, one lab visitor noted. “After seeing the cutting-edge cancer research firsthand in the laboratory, I was able to see how the Susan G. Komen dollars are helping fund research with the goal of ending breast cancer.”
Komen is proud to support Dr. Lannigan’s ongoing research, which is being done in collaboration with Dr. Ian Macara, Professor and Chair of Cell and Developmental Biology at VUMC.
Fortunately, this won’t be the first and last time the public will visit Dr. Lannigan’s Vanderbilt lab. The success from this visit inspired more to come.
-In addition to Drs. Macara and Lannigan’s funding, Komen has invested more than $80 million towards finding better ways to treat TNBC. Learn more about Komen’s research investment in TNBC.
One of the most important elements of the Susan G. Komen mission is funding breast cancer research, and today, we’re excited to share an important breakthrough made possible in part by more than $1 million in Komen funding.
A study published today in Nature Genetics, marks the discovery of a new breast cancer susceptibility gene called RECQL. Led by Dr. Mohammad Akbari (University of Toronto) and Cezary Cybulski (Pomeranian University, Szczecin, Poland), this work featured an important contribution from Komen Scholar Dr. William Foulkes of McGill University (Montreal, Quebec) who has received long-term support from Komen, and a $1.125 million grant in 2010 for this work. Working with Quebec colleagues based at McGill and at the University of Laval, Foulkes was able to provided convincing data to support the candidacy of RECQL as a new breast cancer susceptibility gene.
The research is groundbreaking, because breast cancer susceptibility genes and their associated mutations are difficult to identify. In fact, all of the mutations in breast cancer susceptibility genes that we currently know of (including BRCA1 and BRCA2) account for just half of all inherited breast cancer cases.
But Dr. Foulkes’ work lays the foundation for more discoveries that may one day help women assess their risk and take action for their health. We learned this from Dr. Mary-Claire King’s identification of the location of the BRCA1 gene in 1990. Researchers knew then that BRCA1 would be an important gene, but it took several years before it could be determined with certainty that BRCA1 mutation carriers have a 55 to 65 percent chance of developing breast cancer by age 70 (much higher than women at average risk). Or, that women who have a BRCA1 gene mutation are at a higher risk of developing triple negative breast cancer – an aggressive and potentially lethal form of the disease.
Subsequently, in work also funded by Komen, another important breast cancer gene, PALB2, was found to lead to a 35 percent risk for breast cancer by age 70, showing that these initial discoveries do lead to the acquisition of clinically meaningful data.
This knowledge led to tests for BRCA and PALB2 gene mutations that have helped women and men with the mutation make decisions about their own health, based on their individual risk. The same potential exists for the RECQL mutation if and when testing for the mutation is available.
While we know there is still a lot to learn about both the RECQL gene mutations and breast cancer in general, we’re eager and excited to see what the future holds.
And we are even more inspired to keep funding research that will end this disease. We fund along the entire cancer spectrum – from causes to cures – to reduce mortality and incidence of breast cancer.