Those words hung in the air – weightless – creating an emotional limbo into which I floated
Finally I said, “What isn’t fine – now?”
I didn’t want this conversation, I thought, but, as I heard the results of my mammogram, I kept hearing in my heart, “You’ll be fine, really… you will be fine”. It appeared that Dr.Connor had just provided me with the mantra that would take me through my season with breast cancer.
Breast cancer was the iconic phobia of my life, and now I had it. Strangely, the word itself lost its obnoxious power to frighten me, as my husband, Bill Rollnick and I began our private race for a cure. But, to my surprise we were not running alone.
Friends appeared with loving support and information. Among them, Nancy Brinker, (a remarkably caring woman who has dedicated her life to ending breast cancer) who assessed my situation and candidly gave me her best advice:
“Don’t be a brat! Listen to your doctors!”
“Yes Ma’am,” I muttered, in the throes of endorphin-released laughter.
It wasn’t so funny, however when I began my research.
The first topic that caught my eye was, “Breast Cancer Death Without Treatment.” Well, that certainly cuts to the chase! I read it, but the only word I remembered from the article was ‘treatment,’ which brought on a massive, emotional surge of gratitude. I could turn my back on death.
I can be treated. I will be fine. My mantra has taken on a codicil.
Doing cancer research on the Internet can be daunting, but I soon found the Susan G Komen and Mayo Clinic: Diseases and Conditions websites. They became my go-to sites for both their accuracy and relevance.
Bill and I choose M.D. Anderson in Houston, Texas, and I had my team – Incredible doctors headed by Dr. Tom Buchholz.
Diagnosis: Left Breast – Stage 2 Node Negative, Invasive Lobular Carcinoma.
Treatment: Four weeks of radiation followed by adjuvant hormonal treatment (five years of aromatase)
Comfort Food: Goode’s Texas BBQ and Molina’s Cantina.
I was set, and I could not believe just how lucky I was. I really will be fine!
When I first arrived I heard the clanging of a bell. Odd, I thought and asked what it was. “The bell that is rung when someone has finished treatment”, I was told. Wow, I thought. One day Bill and I will ring the bell together. It became our goal – our victory.
That month at M D Anderson changed my life, not only because of the superlative treatment I received, but I found I had become part of a community of women (and men) who care, who love, and who join joyfully together to celebrate life one day at a time.
Bill and I often think back to my time at M. D. Anderson… to the truly brave women – many who had lost their hair and who were facing stage IV diagnosis, to their stories, to their laughter and friendship, and finally to the bell that rang each time a patient finished their treatment, offering us all hope with each triumphant chime.
Is there any wonder why we both are passionate to support cancer research and treatment?
This year, my husband and I are honored to co-chair the Susan G. Komen’s 5th annual Perfect Pink Party, held in Palm Beach, alongside Christina Baker. The event raises much needed funds for cancer research and treatment. We thank them for the incredible work that they do, and for the reality that this happy, fun event will make a difference in the lives of breast cancer patients all over the world.
Click here to learn more about the Perfect Pink Party and Komen’s work in the Palm Beach area.
Scientific Grants Manager Dr. Jamie Stanford shared some recent findings by Komen-funded Scientist Dr. Antoine Karnoub who is currently an Assistant Professor at Beth Israel Deaconess Medical Center and Harvard Medical School.
There are many puzzles that need to be solved to fully understand breast cancer, but one puzzle in particular has scientists buzzing like bees lately. How do normal cells behave around cancer cells? How do cancer cells speak to, even manipulate normal cells, to help them not only survive, but metastasize? And, why do scientists care about ‘normal’ cells when they should be focusing on ‘cancer’ cells?
In a recent publication, Komen-funded Scientist Dr. Antoine Karnoub has pieced together parts of this puzzle. His studies show that a special group of normal cells within the breast tissue environment – called Mesenchymal Stem Cells (MSCs) – are directly recruited by the growing breast cancer cell army. “We think that by direct actions on the cancer cells and by manipulating other cells in the microenvironment, MSCs end up providing cancer cells with better abilities to survive and a safe haven in which to thrive,” said Dr. Karnoub in a recent interview.
- FOXP2 protein levels are lower in breast cancer cells.
- Low FOXP2 levels are found in metastatic breast cancer and associated with poor patient survival.
- HER2 positive breast cancer had the lowest levels of FOXP2 indicating that it may be a factor in predicting future metastasis.
Dr. Karnoub figured out one additional piece in the complex story involving breast cancer cells and MSCs. His team found that breast cancer cells make a particular small piece of RNA in abundance – called microRNA-199a – when they come in contact with MSCs.
MicroRNAs are small pieces of RNA and their overall role is to stop the production of target proteins. It turns out that microRNA-199a inhibits the production of FOXP2, a protein previously linked to speech and language development, but had never been linked to breast cancer.
They asked if reduction of FOXP2 levels had any effect on the behavior of breast cancer cells, and were surprised to find that inhibiting it caused the cancers to metastasize or spread to other parts of the body with more potency. Therefore, reducing microRNA-199a levels, which would result in increased FOXP2 protein, could reduce metastasis. Dr. Karnoub and colleagues are currently conducting these studies using Komen support.
“We are one step closer to understanding how [normal] cells in the tumor microenvironment, such as MSCs, promote the malignancy of neighboring cancer cells”, Dr. Karnoub explained. While metastasis is a scary word, patients can find some peace in knowing that dedicated scientists from all around the globe are working together to understand it so that it can be controlled, prevented, and treated. Piece by piece, the puzzle will be put together.
Dr. Karnoub’s study was published in Cell Stem Cell in October, 2014.
Read more research stories on our Research Accomplishments page.
Guest blog by Karen Durham, Member of Susan G. Komen Advocates In Science (AIS) steering committee
The North Central Region of Susan G. Komen hosted a series of educational webinars during October, Breast Cancer Awareness Month. The October 22 webinar was titled “The Metastatic Cascade” presented by Dr. Danny Welch, PhD, a Komen Scholar and the Director for the National Foundation for Cancer Research Center for Metastasis Research for the University of Kansas Medical Center. Dr. Welch’s research is focused on understanding how tumor cells acquire the ability to spread to other parts of the body, or metastasize.
I have not called Dr. Welch “doctor” in a long time! To me, he has been ‘Danny’ for many years. Danny is very personable, open, and receptive to research advocates. Danny is also one of the few researchers focused on metastasis research – and I am living with metastatic breast cancer (MBC). We have become good friends over the years because of this; such good friends that he can take one look at me and tell if I’m having a bad emotional day. Danny is a dear friend who is trying his best to find the advances and cures to keep me alive!
40,000 women in the U.S. die from breast cancer each year. Over 90 percent of these deaths are associated with metastases. MBC presents some of the most challenging questions in breast cancer research. Answering these questions requires both more funding and more researchers interested in this topic.
One very interesting aspect of the webinar was Dr. Welch’s explanation of the “hallmarks” of metastatic cells which are:
- They must invade a distant part of the body from the original tumor site
- Be able to survive in a distant part of the body
- Be able to establish a new home in the distant site
- Be able to colonize or multiply in the distant site
He explained that a tumor cell must be able to complete all four of these functions or it will not be able to form metastatic tumors.
“We are slowing making progress, but we are not where we want to be. We need to take circulating tumor cell information and look at the genetic changes, and we need to be able to personalize treatment for each patient.” – Dr. Danny Welch
Dr. Welch spoke about genes that are known to cause metastases; interestingly not all 35 of these have an obvious connection to breast cancer. Exploring how these genes influence metastases gives researchers the opportunity to study them from a new perspective.
Dr. Welch’s lab is working to understand metastasis and how to stop it. He is studying metastasis suppressor genes, like the KISS1 gene which prevents tumor cells from colonizing at a distant site in the body. He is also investigating the role of mitochondrial genes in metastasis and how these genes might make some patients more susceptible to metastatic disease. I was excited by the new information presented in the webinar. However, the bottom line is that there is still no cure for metastatic disease. The best we can hope for is that there are enough different drugs to prevent our diseases from spreading further until the cures are found. Depressing - YES – but it is also extremely encouraging any time there is something new on the horizon that may help me, or the estimated 150,000 like me living with MBC, live longer lives.
Post by Komen Coastal Georgia Executive Director Beth Desloges
Monday, Sept. 15, a billboard went up alongside a busy intersection in Savannah, GA, featuring 10 local community leaders donning bright pink wigs. The unveiling of this billboard signaled the kickoff to one of Komen Coastal Georgia’s most successful campaigns to date – the Inaugural “BigWig” Campaign.
The 10 individuals serving at the forefront of this campaign represent some of the most prominent local leaders here in Coastal Georgia. In partnering with our Affiliate, each BigWig made it their mission to make a lasting impact and start a dialogue about breast cancer in their community.
For both our Affiliate and the city leaders involved, being a BigWig within the Coastal Georgia community meant that not only were you a standout leader but you also had a true passion for helping others. For our service area specifically, this meant helping the under-insured women within the community receive much-needed access to breast health care.
Recently, I spoke to a woman who represents so many women within our community. She reached out to our Affiliate for guidance, as she had recently discovered a lump in her breast which had become increasingly painful. The woman had discovered the lump a month prior, and acknowledged the need to seek treatment, but unfortunately was unable to do so due to financial struggles.
I explained to the BigWigs that thanks to the generosity and commitment of our local donors, I was able to get her the help she needed. We were able to navigate her to a local Komen-funded program where she was guided through her screening, diagnosis, and treatment. The BigWigs understood that this story represented the stories and struggles of many women within Coastal Georgia, embracing it as a reminder of why the campaign was so important.
We asked each local leader to raise $1,000 each throughout the month of October, in an effort to raise a total of $10,000. Our Board Members recruited BigWigs from a wide range of professions including a doctor, a lawyer, an educator, a government official, etc. Click here to view the full list of BigWigs.
Early on, the BigWigs listened with open hearts to the Komen Coastal Georgia stories of impact and needs within the community, furthering their knowledge of breast health and prevention through education on Komen’s mission and work within their service area. They then carried this knowledge to share within the community, with friends, family and soon began sharing their own personal stories of inspiration.
Each BigWig involved with the campaign had been exposed to or felt the impact of breast cancer in some capacity, whether it be a sister, mother-in-law or beloved neighbor who is a breast cancer survivor, a dear friend that is currently fighting, or a loved one who lost the battle. And each time a BigWig was approached by inquiring members of the community as to why they were wearing pink wigs, it provided them with the opportunity to share these experiences and more importantly Komen’s mission and the difference being made right in their own backyard.
Throughout the month-long campaign, the BigWigs received overwhelming support and were extremely moved by how the community embraced their stories and requests for donations. The energy and passion surrounding the campaign grew tremendously with each passing week, and encouraged the BigWigs to get out and talk to more and more people.
They took their role as Komen Ambassadors very seriously, and in their excitement, the BigWigs scheduled numerous speaking engagements at local Rotaries and other clubs. Pink wigs were surfacing all over town. And BigWig stories were being heard throughout the community.
Through the leadership of the BigWigs, the engagement of our Board, and the encouragement of our constituents, the campaign became a social media sensation within our community. As one local news anchor told me, “I haven’t seen anything create this much energy and passion in a long time.”
When I reflect back on this campaign and its success, a quote by Margaret Mead resonates most with me and our Komen Coastal Georgia family, “Never doubt that a small group of thoughtful citizens can change the world. Indeed, it’s the only thing that ever has.”
This campaign, originally designed to raise $10,000, exceeded all expectations thanks to the passion and hard work of the BigWigs, ultimately raising over $40,000 (and counting) as well as providing the much needed education to hundreds of men and women within our community about the importance of early detection.
Post by Komen AIS Steering Committee
Among these was her pioneering, energetic passion for:
- connecting people with the promise of research,
- connecting researchers with the insights to be discovered from patients, and
- nurturing young medical researchers…our hope for a healthier future.
Beyond serving as an advocate grant reviewer and active advocate for Susan G. Komen’s research program, Bev leaves a legacy rich in pathways for us all to explore in our own work.
Her efforts in research advocacy began through her relationships with early-career investigators in Komen Scholar Dr. Danny Welch’s lab (then at the University of Alabama at Birmingham).
Dr. Welch remembered his friend and colleague, saying, “Bev was one of the most energetic, creative, hardworking advocates I have ever known. Bev was one of those people who come into your life and leave an indelible mark. Her indomitable spirit lives on and will continue to motivate.”
Through her relationship with Komen North Central Alabama, she facilitated Lunch & Learns, uniting researchers with breast cancer patients and survivors, to talk about their research the impact on patients. The Lunch & Learns left attendees with a greater understanding of research and of patients’ needs and hopes, along with a passion for supporting research designed to ultimately improve care for patients.
Under Bev’s leadership, Komen NC Alabama also sponsored young postdoctoral students and junior faculty so they could participate in a major scientific research forum to meet with leading researchers and learn more about the most promising research underway.
For four years, Bev and Dr. Welch mentored young people at the American Association for Cancer Research (AACR) annual meeting, giving these young innovative minds the opportunity to attend AACR’s Scientist-Survivor Program events where they met other advocates. The relationships they built have facilitated numerous research collaborations across the country.
Bev regularly participated in graduate/postdoctoral fellowship classes, helping students understand the importance of communicating their research to the “lay audience,” using terms and analogies that people could relate to. In speaking with classes, she shared her journey. She made cancer “real” for the students and postdocs who were preparing to launch careers in breast cancer research.
Bev also wrote letters of support for postdocs applying for academic positions, and introduced them to local advocates she knew.
Bev’s accomplishments and leadership roles spanned the cancer advocacy and research fields. Within Komen, she was a beloved “sister” and breast cancer “thriver.” She was extensively involved with her Affiliate, including her role as a founding member, and was active with the Komen Advocates in Science (AIS), serving on our Steering Committee.
In the coming year, Komen will be launching an advocate mentor program. Although this program is still in development, the purpose of the program is to match newly Komen-funded Postdoctoral Fellows (PDFs) with a Komen research advocate, known as our Advocates in Science.
The program aims to inspire young researchers to make a greater difference for patients by working with and learning from the real life experiences of those who have or are facing breast cancer. It will also empower advocates to have a greater impact by learning more about research through first-hand experience.
For her extraordinary, pioneering leadership in working with young researchers and connecting them with our greater Komen community, the AIS Steering Committee dedicates the launch of the advocate mentor program to Bev. Her legacy will serve as the inspiration and cornerstone of the depth and breadth of the relationships advocates, researchers and affiliates can achieve working together to put an end to cancer’s devastation.
Thank you, Bev, for forever being our friend, teacher and advocate extraordinaire!