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  • Wayne Dornan: A Glimpse in to Life with Male Breast Cancer

    Written by Breast Cancer Survivor & Komen Advocates in Science Member, Wayne Dornan

    My life was turned upside down in 2008 when I received the devastating news that I had stage IIB breast cancer. Like most men who are diagnosed with breast cancer, I found it completely by accident (getting breast cancer is not really something we think about).

    It was such a roller coaster ride. I found the lump in the shower on a Friday morning, had an ultrasound that afternoon, a biopsy the following Monday and by Wednesday (coincidentally, my birthday!) I was having surgery.

    I remember hearing the words, “you have invasive ductal carcinoma,” and feeling shattered to the core. At first, I was embarrassed by my diagnosis… as if somehow it would be better if I had a “male form” of cancer. But I quickly decided that I would take this disease head-on. It would not define me or change the way I lived.

    When my chemotherapy made me feel like lying down, I’d go play golf. When it made me feel sick, I’d have something to eat. My family was incredibly supportive throughout my journey (albeit surprised to learn that I had breast cancer), and while I have yet to meet another male breast cancer survivor, I found support in many places.

    I felt called to share my unique experience with others, so I retired early from my position as Academic Dean at Utah Valley University, and I began to write. When I finished my book, I decided it was time to get involved with my local Komen Affiliate – Komen Greater Nashville.

    Through the local Race, I was connected with Komen’s Advocates in Science (AIS) program – a community of dedicated volunteer advocates who bring a patient voice to research and advocacy. In 2015, I was appointed to be a member of the AIS. My first opportunity to really make an impact came when I was awarded a Travel Scholarship to attend the 2016 Susan G. Komen Advocacy Summit in Washington, D.C.  It was my first time as a male breast cancer survivor to attend any event that focused on breast cancer.

    We had three asks for our elected representatives:

    -          Increase federal cancer research funding for the National Institutes of Health (including increased funds for the National Cancer Institute);

    -          Protect funding for the National Breast and Cervical Cancer Early Detection Program, which provides lifesaving breast cancer screening to low-income, uninsured and underinsured women who don’t qualify for Medicaid; and,

    -          Cosponsor oral parity legislation (so patients aren’t paying high costs for medications that can be taken in pill form, rather than traditional IV).

    The Summit began with a training where we learned the basics about the legislative process and I probably made the biggest faux pas of my life. I asked the very distinguished woman sitting next to me, “Are you with Susan G. Komen, or are you a supporter of the organization?” She very politely turned to me and said, “My name is Nancy Brinker, and I am the founder of Susan G. Komen. Susan Komen was my sister.”

    How do you respond to something like that?! Nancy Brinker (who I had obviously never met) is my hero, and I was mortified. Her work with breast cancer has affected millions of breast cancer survivors, and saved countless lives; her dedication to curing this disease is truly remarkable. After sitting with her for over two hours that afternoon, I realized that she is a very special person, and so dedicated to what she is doing. It was truly an honor to meet her.

    As we prepared for our meetings the next day, one of our three federal policy priorities really started to speak to me: oral parity. While most chemotherapy drugs used for cancer treatment are administered intravenously, many are now available in oral form. Unfortunately, insurance coverage has not kept pace, and some patients may face out-of-pocket expenses as high as $5,000 – $10,000 a month! I realized that although there are two bipartisan bills currently supporting oral parity (one in the Senate, and one in the House), no legislator from my state of Tennessee had signed on to co-sponsor.

    So, during our meetings the next day, we pushed really hard, asking our legislators to support oral parity. And it worked! At the end of the day we received an email from a congressional staffer that said Congressmen Scott DesJarlais (TN-4) had just co-sponsored the bill in the House. When we heard the news, we all gave each other a congratulatory hug! Since then, we have learned that Congressman Marsha Blackburn (TN-7) also signed as a co-sponsor.

    That moment was just one highlight from a truly remarkable experience. Everyone on the Hill with us that day was proud to support Komen and eager to make an impact in the fight against breast cancer – from the Capitol police officers to the members of Congress.

    Personally, I felt welcomed and empowered to be surrounded by people who have such a passion and dedication to not only ending breast cancer, but also to improving the quality of life for the millions of people who have been affected by this disease.

    I just celebrated eight years cancer-free (also known as, my birthday) and I’m proud to say that what once made me uncomfortable now feels like a badge of honor. I will continue to do everything in my power to help eliminate breast cancer forever.

  • Harmony In The Wake Of Heartbreak: Transforming Women’s Health In Bosnia

    The following blog appeared on in The Huffington Post on June 25, 2016.

    When I first met Nela Hasic – Regional Director of the Women’s Health Empowerment Program (WHEP) in Bosnia and Herzegovina – it was immediately clear that I’d met someone special.

    In 1992, in the aftermath of the collapse of Yugoslavia, Bosnia’s capital of Sarajevo – Nela’s home – came under siege. She received a call from the American Jewish Joint Distribution Committee (JDC). “JDC is airlifting members of the Bosnian community to safety,” she was told. “You have to be at the airport in half an hour.”

    Nela recounted that she was reluctant to leave, believing that war would soon pass over the city, but her father (a Holocaust survivor) told her, “Once in my life, I lived through a similar situation. We thought everything would be okay, that nothing would happen – and then I ended up alone in the world.”

    So she grabbed her two young children (then 5 and 3), two sets of pajamas, a coat and her purse, and left. After six months in Belgrade and Budapest, living as a refugee with her kids, Nela reconnected with her husband (who was rescued by JDC’s other convoys), and shortly thereafter, they left for Israel and “made Aliyah.” After a decade building a new life in Israel, Nela and her family decided to return to her home of Bosnia. But in the wake of so much tragedy, it was hardly the home she remembered.

    Their future in their “new” home was uncertain… until Nela was asked by the JDC to lead the WHEP – a program that encourages the early detection of breast cancer, creates support groups and hotlines, and facilitates partnerships in the community. The WHEP was originally established by the JDC in 1995, and Susan G. Komenbecame a partner of this groundbreaking work in 2005.

    Nela’s personal journey of pain, promise and hope has made her an effective leader for women’s health throughout the country. Her passion and determination were clear when I had the opportunity to see this work firsthand during my very first visit to Bosnia last month.

    2016-06-24-1466794921-7424508-Bosniatrip.jpg

    I was familiar with the country’s heartbreaking history, which still leaves portions of the population divided – some by chance, others by choice.

    But more familiar were the obstacles they had to overcome as they worked to combat breast cancer. JDC leaders I met with recounted that when the WHEP was created in 1995, there was no awareness of breast cancer in Bosnia. In fact, the way people perceived this disease was similar to the reality we faced in the United States when our organization was founded in 1982 – a shroud of shame, stigma and misinformation.

    And just as we had to change the conversation in the U.S., change was needed in Bosnia. Fortunately, we have a courageous, persuasive and determined woman at the helm.

    Nela and our partners through the WHEP and JDC worked from the ground up to build a country-wide organization that served all women and overcame barriers. She started with one other advocate, and is now joined by women from 23 organizations from across the region. “We don’t give the floor to religion or other differences,” she told the Times of Israel. “Women’s health is our agenda.”

    Viewing footage from the first Bosnia Race for the Cure in 2008, and comparing it to last year’s Race demonstrates the transformation Nela and the JDC have driven better than words can (trust me, you don’t need to speak Bosnian, Serbian or Croatian to witness the power of this work). In the course of just 7 years, our Race participants more than doubled, growing from 2,400 to more than 7,000 participants.

    Throughout my visit, I often found myself in awe of the friendship and harmony that Nela and the WHEP were able to foster among women of all faiths and backgrounds. I was only there for (a hectic) 40 hours, but I felt as though I’d made friends for life.

    I had the opportunity to visit a local village where a group of women gathered at the mosque to hear from a female physician about what a mammogram is. We later gathered at a health clinic, where the WHEP brought OB/GYNs and a mobile mammography unit to offer health services to the women. The technicians planned to screen 50 women, but was able to screen 60 (for 90 percent of these women, it was their very first mammogram)!

    I visited with a group of survivors, who regularly meet in Sarajevo to create heart pillows for women currently in breast cancer treatment – a gift truly from the heart of women who sought only to support one another.

    2016-06-24-1466794966-5877382-HeartPillowsBosniaJAS.jpg

    Thanks to the way this partnership has transformed women’s health through Bosnia, others are seeking to learn from Nela and WHEP. During my time in Bosnia, we were accompanied by the most unlikely of partners – Israeli and Palestinian women – who jointly approached the WHEP for guidance on how to support women facing breast cancer in their own communities.

    That is the power of partnership – of goals and determination.

    Nela would be the first to tell you, though, that it’s no easy task. There is no shortcut from A to Z. Instead it is a journey… from A to B to C and so on.

    The key is bringing women together to empower one another.

  • Warning Signs of Male Breast Cancer

    Mayra Sandoval receives many anonymous calls as a Komen breast care helpline specialist. One call she remembers in particular was from a distressed wife inquiring about a lump her husband found within his chest.

    In addition to the immediate medical concern, she was even more worried because they did not have health insurance.

    “I provided the wife with various resources, as well as fact sheets on breast cancer in men,” Sandoval said. “Men don’t call the helpline as often as women. Men appear to be more ashamed of the stigma of having a ‘female’ disease.”

    Sandoval believes awareness of breast cancer in men is key in educating the public about judged or perceived gender views when it comes to the disease. 

    This past year, about 14,000 people contacted the Susan G. Komen helpline seeking assistance for breast cancer related issues – seeking advice and financial assistance, learning about their diagnoses and more. Of those nearly 14,000 contacts, 624 were male-related breast cancer inquires.

    While it is widely acknowledged that one in eight women in the U.S. will be diagnosed with breast cancer in her lifetime, it is often overlooked how men can get breast cancer too.

    Breast cancer in men is rare in the United States, one in 1,000 U.S men will be diagnosed with breast cancer, but it is still imperative for everyone to know their risk.

    In addition to knowing their family history, it is important for men to be aware of the most common sign of breast cancer. Most often, it is a painless lump or thickening in the breast or chest area.

    However, any change in the breast or nipple can be a warning sign of breast cancer in men including:

    -Lump, hard knot or thickening in the breast, chest or underarm area (usually painless, but may be tender)

    -Change in the size or shape of the breast

    -Dimpling, puckering or redness of the skin of the breast

    -Itchy, scaly sore or rash on the nipple

    -Pulling in of the nipple (inverted nipple) or other parts of the breast

    Because men tend to have much less breast tissue compared to women, some of these signs can be easier to notice in men than in women.

    “Hopefully we will continue to gather more information on breast cancer in men to further awareness of the disease,” Sandoval said.

    This June during men’s health month, Komen encourages men to be aware of all potential health issues – not just those considered common. Knowing your body, health history and regularly seeing your doctor are the best ways to be sure any issues are detected as early as possible – which helps save lives.

  • Male Breast Cancer: My Badge of Honor

    By Wayne Dornan, Komen AIS Member 

    My life was turned upside down in 2008 when I received the devastating news that I had stage IIB breast cancer. Like most men who are diagnosed with breast cancer, I found it completely by accident (getting breast cancer is not really something we think about).

    It was such a roller coaster ride. I found the lump in the shower on a Friday morning, had an ultrasound that afternoon, a biopsy the following Monday and by Wednesday (coincidentally, my birthday!) I was having surgery.

    I remember hearing the words, “you have invasive ductal carcinoma,” and feeling shattered to the core. At first, I was embarrassed by my diagnosis… as if somehow it would be better if I had a “male form” of cancer. But I quickly decided that I would take this disease head-on. It would not define me or change the way I lived. 

    When my chemotherapy made me feel like lying down, I’d go play golf. When it made me feel sick, I’d have something to eat. My family was incredibly supportive throughout my journey (albeit surprised to learn that I had breast cancer), and while I have yet to meet another male breast cancer survivor, I found support in many places.

    I felt called to share my unique experience with others, so I retired early from my position as Academic Dean at Utah Valley University, and I began to write. When I finished my book, I decided it was time to get involved with my local Komen Affiliate – Komen Greater Nashville.

    Through the local Race, I was connected with Komen’s Advocates in Science (AIS) program – a community of dedicated volunteer advocates who bring a patient voice to research and advocacy. In 2015, I was appointed to be a member of the AIS. My first opportunity to really make an impact came when I was awarded a Travel Scholarship to attend the 2016 Susan G. Komen Advocacy Summit in Washington, D.C.  It was my first time as a male breast cancer survivor to attend any event that focused on breast cancer.

    We had three asks for our elected representatives:

    -          Increase federal cancer research funding for the National Institutes of Health (including increased funds for the National Cancer Institute);

    -          Protect funding for the National Breast and Cervical Cancer Early Detection Program, which provides lifesaving breast cancer screening to low-income, uninsured and underinsured women who don’t qualify for Medicaid; and,

    -          Cosponsor oral parity legislation (so patients aren’t paying high costs for medications that can be taken in pill form, rather than traditional IV).

    The Summit began with a training where we learned the basics about the legislative process and I probably made the biggest faux pas of my life. I asked the very distinguished woman sitting next to me, “Are you with Susan G. Komen, or are you a supporter of the organization?” She very politely turned to me and said, “My name is Nancy Brinker, and I am the founder of Susan G. Komen. Susan Komen was my sister.”

    How do you respond to something like that?! Nancy Brinker (who I had obviously never met) is my hero, and I was mortified. Her work with breast cancer has affected millions of breast cancer survivors, and saved countless lives; her dedication to curing this disease is truly remarkable. After sitting with her for over two hours that afternoon, I realized that she is a very special person, and so dedicated to what she is doing. It was truly an honor to meet her.

    As we prepared for our meetings the next day, one of our three federal policy priorities really started to speak to me: oral parity. While most chemotherapy drugs used for cancer treatment are administered intravenously, many are now available in oral form. Unfortunately, insurance coverage has not kept pace, and some patients may face out-of-pocket expenses as high as $5,000 – $10,000 a month! I realized that although there are two bipartisan bills currently supporting oral parity (one in the Senate, and one in the House), no legislator from my state of Tennessee had signed on to co-sponsor.

    So, during our meetings the next day, we pushed really hard, asking our legislators to support oral parity. And it worked! At the end of the day we received an email from a congressional staffer that said Congressmen Scott DesJarlais (TN-4) had just co-sponsored the bill in the House. When we heard the news, we all gave each other a congratulatory hug! Since then, we have learned that Congressman Marsha Blackburn (TN-7) also signed as a co-sponsor.

    That moment was just one highlight from a truly remarkable experience. Everyone on the Hill with us that day was proud to support Komen and eager to make an impact in the fight against breast cancer – from the Capitol police officers to the members of Congress.

    Personally, I felt welcomed and empowered to be surrounded by people who have such a passion and dedication to not only ending breast cancer, but also to improving the quality of life for the millions of people who have been affected by this disease.

    I just celebrated eight years cancer-free (also known as, my birthday) and I’m proud to say that what once made me uncomfortable now feels like a badge of honor. I will continue to do everything in my power to help eliminate breast cancer forever.

  • A Family Health Portrait

    The following blog appeared in The Huffington Post on May 4, 2016.

    By Judy Salerno, M.D., M.S., President and CEO of Susan G. Komen and Theodora Ross, M.D., Ph.D., Author of “A Cancer in the Family: Take Control of Your Genetic Inheritance“ and Director of University of Texas Southwestern Medical Center Cancer Genetics Program

    It may be impossible to fully appreciate the impact our parents have on us… until the first time you’re told that you “sound like your mother” (or father).

    Our families shape everything from our diction to dining preferences, from our humor to our habits. But perhaps even more significantly, they shape our health, or at least provide some clues as to what we could encounter in our lives.

    Ask yourself, do you know — completely and accurately — your family’s health history? Have you looked into those specific diseases that affected your mother, father, aunt or uncle? Have you considered how their experiences may apply to you now and in the future?

    It can be far too easy to dismiss health issues — particularly cancer — as just “flukes” or “red herrings,” even if they’re seen again and again across a single family. In one of our own families [Ross], diagnoses of cancer were well-known (even if they were sometimes incorrectly labeled in conversation), yet they were conveniently deemed coincidental. It was years before results of a postponed genetic test showed otherwise.

    But in many families, cancer isn’t even discussed. Health struggles and “flukes” aren’t shared.

    In a recent interview, Jacob Bernstein, the son of the late, multitalented writer, director and journalist Nora Ephron, discussed how his mother cherry-picked what she told us about herself. Ephron has been proclaimed by many as a “relentless truth-teller,” but kept her myelodysplastic syndrome that led to her leukemia a secret for as long as she could.

    Bernstein’s explanations for this secrecy ranged from a desire to prevent insurance discrimination to a fear of being a “victim.” This common belief that those with cancer are victims who can’t muster the strength to contribute is worth debunking. People with cancer are not simple victims. They are simply people with a problem to solve. Why Ephron would detail the pain of her divorce with Carl Bernstein for us in her book Heartburn, but keep her cancer diagnosis a secret is, at a gut level, understandable, but at the brain level, a disappointment. Her description of her cancer experience would have interested and affected us all.

    After listening to this interview, a friend commented with, “If I had cancer, I’d never tell my kids.” When asked why, he said he was estranged from his kids and they wouldn’t care. Ouch. Makes sense.

    They should care, because knowing your family’s health history matters. And when it comes to cancer, few of us have knowledge of an accurate family history.

    This is reflected in the alarming fact that the majority of people with mutations that cause the most common hereditary cancer syndromes (hereditary breast and ovarian cancer and Lynch Syndrome) are not aware of their mutations. This is astounding, as actions based on this knowledge could save their lives.

    When it comes to breast cancer, the majority of breast cancers (approximately 90 percent) are not caused by known inherited gene mutations. However, there are a number of known family health history factors that have been linked to an increased risk of breast cancer. Some of them may surprise you:

    - Having one or more first-degree female relatives with breast cancer
    - A young age at which relatives were diagnosed with breast cancer (in general, the younger the relative was when diagnosed, the greater a person’s chance of getting breast cancer)
    - A male relative with breast cancer
    - A personal or family history of ovarian cancer
    - A family history of prostate cancer
    - A personal or family history of melanoma
    - A family history of pancreatic cancer

    These are all important pieces of your health history that should be shared with your health care provider to help him or her understand your risk of breast cancer, and whether genetic counseling or testing might make sense for you.

    In many families, the genetic changes associated with hereditary breast cancer are unknown. Identifying additional genetic risk factors for breast cancer is an active area of medical research. We are currently only aware of a handful of genes that when mutant cause hereditary cancers.

    Some inherited gene mutations linked to breast cancer include BRCA1/2, ATM, CDH1, CHEK2, PALB2, PTEN, STK11, and TP53. We are continuously investigating families with strong histories of cancer to improve our understanding of how inherited cancers develop, and how to block that process. Sequencing thecomplete DNA of patients with strong family histories of cancer, but no known gene mutation, has identified broken genes that could someday be on a list of known inherited gene mutations linked to cancer. Just last year, two groups (one led by Komen Scholar Dr. William Foulkes, the other by Dr. Yuntao Xie) identified a new candidate breast cancer susceptibility gene - RECQL – that may someday be added to the list of genes that are tested to help women assess their risk and take action for their health.

    Nora Ephron wanted us all to “have what she was having,” and to bring happiness to others, especially her family. She didn’t want to burden her children and colleagues with her disease. But these kinds of desires can backfire and impede improvements in our family’s health.

    If you are your family’s outspoken, careful and competent health detective, future generations will thank you.