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).
Susan G. Komen Race for the Cure® series raises significant funds and awareness for the breast cancer movement, celebrates breast cancer survivorship, and honors those who have lost their battle with the diseases. Survivors around the world proudly wear pink Race shirts and become advocates for themselves and others who have been diagnosed. Even though talking about the disease is still taboo in many ethnic groups, women are starting to acknowledge publicly their survivorship at Race for the Cure events. By doing so, they are dispelling myths about breast cancer and have become ambassadors for the cause.
During the month of September, several of our international Susan G. Komen Affiliates and nonprofit partner organizations in Europe celebrated local survivors at five Race for the Cure events in Europe. Races took place in:
- Brussels, Belgium September 7, 2014 (NEW Race) by Think-Pink
- Bologna, Italy September 28, 2014 by Susan G. Komen Italia onlus
- Athens, Greece September 28, 2014 by Alma Zois
- Frankfurt, Germany September 28, 2014 by Susan G. Komen Deutschland e.V.
- Antwerp, Belgium September 28, 2014 by Think-Pink
The Race series is a catalyst for empowering survivors to speak out, share their personal stories and give hope and strength to others. In today’s blog, meet Irini, Martine, Iris, Lucia, and Liliane – five amazing European women who have inspired us with their strength and determination to help others win their fight against breast cancer.
Meet Irini from the Athens Race in Greece
“I was 32 years old when I got the shocking diagnosis “breast cancer.” My life had been full of dreams about love, marriage, children,… dreams about a happy and prosperous future. Suddenly my life was full of fear, anxiety, and uncertainty about the future. Time seemed to stand stil. I just stood there… waiting for my execution. I didn’t have a family of my own. My parents and my friends tried to help. My beloved dog gave me strength to fight for my life because she would not have been able to understand if I abandoned her. I endured a mastectomy, a breast reconstruction, 6-months of chemotherapy, 2 years of menopausal injections and 4 years of hormonal treatment.
A few months after my diagnosis a friend introduced me to the Panhellenic Association of Women with Breast Cancer – Alma Zois. I met survivors of 20 years and received psychosocial support from professionals. Slowly but steadily all my questions were answered. Why me? Why now? What’s next? I was strong before and I thought I could deal with this on my own but with peer support, things were easier. Two years later, I was professionally trained to become a volunteer, offering the same support to newly diagnosed young women. At the same time I started attending European Conferences and meetings.
At that time of my life – after all the chemo, induced menopause and hormonal therapy – I had given up hope for a child of my own. I focused on myself and had a man in my life who wanted me the way I was. Pregnancy was a dream I felt like I had to give up after breast cancer. 9 months after I stopped all medications a miracle happened! I got pregnant and exactly 6 years after my diagnosis, I gave birth to my healthy little girl Iris Hope who is now 7 years old. She keeps me motivated and gives me strength to carry on. I am cancer free now but have to take good care of my health to be there for her, raise her and watch her become a beautiful and strong woman. That is my desire, that is my dream. Healthy lifestyle, frequent screening tests, a positive attitude and a bit of luck… all I want is to stay alive for my little girl!
The Greece Race for the Cure began 5 years ago. I was at the first event with my 2-year old daughter and we have been a part of it ever since. She knows everything about my illness, how I sacrificed my breast in order to save my life. How many pills I have swallowed, how many injections I have endured and how important it is to follow doctors’ orders. She knows that her name – Hope – represents all young women with breast cancer who hope to have a baby someday. Each year, when she gets up on stage at the Race, she feels proud of her mommy, proud and thankful that she was born.”
Meet Martine from the Antwerp Race in Belgium (shown to the left in photograph)
“I was diagnosed with breast cancer in 2008. During my treatment I received a lot of support from my sister Viviane. Just one year after my diagnosis, we trained together for the first edition of the Race for the Cure in Antwerp. The day of the Race all breast cancer survivors received a glass of pink sparkling wine, which I really enjoyed! Viviane was by my side and said she wouldn’t mind having a nice drink herself. In 2010, Viviane went for her routine check-up and was also diagnosed with breast cancer. She called me and said: ‘Next year, at the Race for The Cure in Antwerp, we will be drinking pink sparkling wine together.’ I immediately understood and vowed to be there for her every step of the way. We have been at all six editions of Race in Antwerp and are so happy that we have always been able to cross the finish line together. We give each other strength.”
Meet Iris from the Frankfurt Race in Germany
“When I discovered that I had breast cancer, I was 33 years old and only married for one year to my husband Uwe. We had so many plans for our lives together and were deeply shocked by the diagnosis. I was terrified of doing chemotherapy but realized I have to do everything I can to survive for my husband and my family. Together, Uwe and I went through the most difficult time of our lives but we grew closer than ever before and know that there is nothing in this world that can ever separate us. I want us to renew our vows soon to show Uwe how thankful I am for all his support. He is truly the love of my life.”
Meet Lucia from the Bologna Race in Italy
“I still remember the moment when I received the diagnosis of MY breast cancer. I was sitting in the doctor’s office desperately looking for a real-life remote control to rewind that moment and to erase those horrible words. That day was followed by a period of six months during which I had surgery, I was treated, I lost MY hair, MY eyebrows, MY eyelashes and MY nails. I was supported and protected by doctors and nurses and also by MY old and new friends and by MY family. I went through many bad times and I lived horrible moments but I also experienced a lot of good things.
I now have a visible and painful scar that reminds ME everyday how strong I AM. Since then, I have celebrated two birthdays: the second is the one of MY rebirth when I defeated breast cancer.
Pain can touch our lives in many ways but it all depends on how we react to it. This is the reason why, “I” is the word that best describes the strength of fighting MY breast cancer.
Meet Liliane from the Brussels Race in Belgium (shown to the left in photograph)
“As a breast cancer survivor, I want to do everything I can to fight against this terrible disease and help others be strong and always stay positive. I am now cancer-free but continue to fight alongside of my friend Cathy (to the right in the photo) and other women battling their cancer. Cathy and I had been friends for four years when she received her diagnosis. Facing the same battle deepened our friendship, we can always count on each other, offer a shoulder to cry on and a listening ear. The sense of community among survivors at the Race for the Cure is inspiring and makes us stronger. I participate in all three Belgian Races (Namur, Brussels and Antwerp) and have now formed a support group and Race team in Brussels for my friend Cathy because I feel that together people are stronger. The Cathylili Team consisted of 63 people! I’m very invested in the fight against breast cancer and I’m always looking for ways to do more. Being a breast cancer survivor myself, I fully understand the challenges women are facing. Support of family, friends and other survivors is invaluable and sharing positive thoughts and joy with each other gives us the strength we need to keep fighting!”
To see pictures of our international September Races, visit the following websites:
Italy: Susan G. Komen Italia www.komen.it
Germany: Susan G. Komen Deutschland e.V. www.komen.de
Belgium: Think-Pink www.think-pink.be
Greece: Alma www.almazois.gr
Visit komen.org to find a Race near you.
The following blog appeared in The Huffington Post on October 2, 2014.
This week was the kickoff the 30th observance of National Breast Cancer Awareness Month (NBCAM). As I conducted numerous media interviews about the continued need for research, education, treatment support, and advocacy, it occurred to me that it would be great if we were talking about breast cancer like this every day of the year.
It’s really quite simple. Breast cancer doesn’t know (and doesn’t care) that it’s October, because breast cancer is diagnosed and kills women and men every day of every month of every year. Every 19 seconds, somewhere in the world, a person has a new diagnosis of breast cancer. In the U.S., a woman is diagnosed every two minutes, and one dies every 13 minutes from this terrible disease.
Those are shocking numbers, and behind every one of those numbers is a compelling story. A mother who by sheer will lived long enough to watch a child graduate from high school. A daughter taken too soon from parents who would have given anything to switch places with her. A father carrying a gene mutation that passed breast cancer on to his daughters. A woman without money, without insurance, terrified to seek help until the tumor was breaking through her skin.
I think of these stories in October, and November, and June and April, as does everyone in the breast cancer movement. As much joy as we take in celebrating the women who are cancer-free; as much pride as we take in funding leading research; as much effort as we put into helping the most vulnerable people in our communities, we know that we will be continuing this work until we can shut off the lights and go home, because we’ve cured and prevented this disease.
Until then, we at Komen will keep up the fight for today and for the future. This week, we announced 116 new research grants for 2014, aimed at answers and better methods for preventing, detecting and treating every form of this disease, and especially metastatic and aggressive forms of this disease.
Our 116 new grants include support for 50 “early-career” researchers. These are recent graduates of doctoral, masters’ or baccalaureate programs, and young doctors interested in a career in biomedical research. They are also researchers who need funding to launch their own careers in innovative science.
In a world where resources for medical research funding are dwindling, these young scientists need organizations like Komen to help them continue the next generation of research. That’s what we are doing, while continuing to support the eminent physicians and scientists who have made so much progress possible to date.
In our 32 years, Komen has invested nearly $850 million in research, more than any other nonprofit and second only to the U.S. government. It’s research that has helped push death rates down by 34 percent since 1990, and helped improve the survivability of this disease. You can read about our exciting new grants here.
We also — just in time for NBCAM — launched a redesign of our komen.org website, because ending breast cancer means giving women, men and families the information they need to be empowered patients, with the strength of a community fighting with and for them.
Our komen.org website is a comprehensive resource and enhances the ability of women and men to use the unbiased, up-to-date scientific information on the disease to help them make informed choices about their care, while connecting them to a world of people who care and are available to help them. I hope you’ll visit the new komen.org.
I also hope that as October passes, you’ll keep the journeys of strong and courageous breast cancer patients in your hearts and thoughts. I hope that you embrace the pink that you will see this month, because pink makes it possible to fund breakthrough research and provide community health for those most in need. It gives women the power of community, and unites us in a common purpose — a purpose that will still be urgent when this special month is over.
Thank you for all that you may be doing to help women and men with breast cancer, and know that we, too, will be there whenever and wherever we are needed.
Follow Judith A. Salerno on Twitter: www.twitter.com/Judy_KomenCEO
Tomorrow marks the first day of October, or, as we at Komen know it, National Breast Cancer Awareness Month. It won’t be long before some of your favorite products are adorned with pink ribbons, and we’ll all be reminded of a very important fact: nearly everyone has been touched by this deadly disease.
We’ve made incredible progress against breast cancer in the 32 years since our Founder, Nancy G. Brinker, promised her sister Suzy Komen that she would do everything in her power to end breast cancer.
- Mortality rates from breast cancer are down by 34 percent in the U.S.
- The five-year relative survival rate when breast cancer is detected early is 99 percent!
- Women are more knowledgeable about the disease, asking their doctors about appropriate breast cancer screening tests, healthy lifestyle choices and their personal risk.
But what comes next? Breast cancer still claims a life every 60 seconds, so what is Komen doing to save lives, and, ultimately, end breast cancer?
Starting tomorrow morning, our President and CEO Dr. Judy Salerno will be speaking with some of your favorite radio personalities about key breast cancer issues, including Komen’s commitment to the future of breast cancer research, addressing health disparities and ensuring women have access to vital breast cancer services.
You can hear her LIVE tomorrow morning on a few stations across the U.S., so be sure to tune in to these local stations!
*All times noted are in EST
7:10 a.m. -7:20 a.m.: WTBQ-FM NEW YORK
7:35 a.m. -7:45 a.m.: WOON-AM PROVIDENCE
8:20 a.m. -8:30 a.m.: WAMV-AM ROANOKE
9:10 a.m. – 9:20 a.m.: WFFG-AM MIAMI
9:20 a.m. – 9:30 a.m.: WOCA-AM ORLANDO
10:20 a.m. – 10:30 a.m.: THE BILL MARTINEZ SHOW
Not in your area? No problem. Several other stations throughout the U.S. will be airing conversations with Dr. Salerno throughout the month of October, so be sure to keep an ear out!
Guest post by Komen Scholar Ann H. Partridge, M.D., M.P.H.
Over the past decade, there has been a substantial increase in the number of women with early breast cancer who are choosing to undergo prophylactic contralateral mastectomy (e.g., removal of the healthy breast, usually in conjunction with mastectomy for the breast that has breast cancer), particularly among young women. Reasons for this trend and whether it improves how women do in the long run are under active study.
At the ASCO Breast Cancer Symposium in San Francisco last week, researchers from Canada used the Ontario Cancer Registry to compare outcomes between young women who underwent bilateral mastectomy and those who only underwent unilateral mastectomy.
The study found that among 628 women age 35 or younger at diagnosis who underwent surgery for early breast cancer, those who had bilateral mastectomy (16 percent) did not experience better survival compared with women who underwent unilateral mastectomy. The median follow-up was only 11 years, and other recent data have suggested that even among women with a known BRCA 1 or 2 mutation, who have a higher risk of developing a new breast cancer in the remaining breast in the future, the modest benefit may not be seen for several years. Further, it is possible that a subset of patients may experience benefit, emphasizing that further research to tease out different benefits for different types of breast cancer is needed.
Another study presented at the conference and led by Catherine Parker, M.D., of the University of Alabama, compared outcomes among women who underwent mastectomy, breast-conserving surgery plus radiation, or breast-conserving surgery alone. Prior studies comparing breast-conserving therapy (both with and without radiation) to mastectomy for early-stage breast cancer found no difference in patient outcomes. However, Parker and colleagues challenged this tenet when considering tumor subtype (e.g., triple negative, HER-2 positive, ER-positive), finding breast-conserving surgery plus radiation was significantly associated with longer survival, suggesting that type of local therapy makes a difference in survival rates.
An analysis of breast surgery types within that study confirmed the survival benefit associated with breast-conserving surgery plus radiation among patients with hormone receptor-positive disease, but not among those with hormone receptor-negative disease. Additionally, breast-conserving surgery plus radiation was associated with longer survival than breast-conserving surgery alone, regardless of tumor type.
These recent studies underscore our evolving understanding of how the type of surgery can affect outcomes for women with breast cancer, and that further research is definitely needed. Moreover, they highlight the fact that when women have choices about how to treat breast cancer, they need information and support in order to make the best personal decisions. When I discuss surgical decisions with my patients, especially given the growing body of research suggests that lumpectomy followed by radiation is as good as (if not better than) mastectomy which is as good as bilateral mastectomy in terms of overall survival for most women, I try to help them focus on what will make them feel best, both physically and emotionally, when they are into their survivorship. Findings like those presented at the ASCO meeting are important for both patients and physicians as they make treatment decisions, and I’m pleased to see continued progress in research that will help identify the best treatments for individual patients.