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.
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.
One of the most promising new trends in cancer science is the search for personalized medicines – finding treatments that are right for individual patients and identifying those that might not work based on a patient’s genetic makeup and medical history.
In 2009, Komen provided $6 million in research funding to an Indiana University team looking for genetic markers that could predict which patients would respond to a new experimental drug. Soon, the research from this Komen Promise Grant opened promising new doors about genetics and treatment side effects. The team was led by Indiana University’s Bryan Schneider, M.D. (one of our Komen Scholars) and the late David Flockhart, M.D., Ph.D., along with patient advocate Mary Lou Smith, Esq., co-founder of Research Advocacy Network.
We spoke to Dr. Schneider about this grant to learn more.
Komen: Dr. Schneider, thanks so much for your time and for the important work you do in the fight against breast cancer. Could you walk us through the ins and outs of your Komen Promise Grant?
Schneider:Of course. The main goal was to deliver better personalized medicine. We did this by leveraging two large randomized trials (involving about 5,000 patients from around the globe), comparing an experimental drug (bevacizumab, or Avastin) to standard treatment with chemotherapy. Our goal was to use genetic data that we collected from patients to identify those individuals who would benefit from treatment.
Along the way, we realized that we also ended up with a great deal of detailed information about the side effects patients suffered from – regardless of which drug they were given.
Komen: How can this study change medicine now?
Schneider: I think we, as researchers, do a great job of determining which drugs will work for which patients, but often overlook serious treatment effects, such as peripheral neuropathy or congestive heart failure.
I can tell you from my own experience that some patients fear the word “chemo” more than the word “cancer.” If we can understand who is at increased risk for these life-altering side effects, it could impact how patients receive therapy, or if maybe an alternative therapy or foregoing therapy altogether is a better option. For now, the most important takeaway is that we will be able to tailor our therapies not just to those we think will benefit, but also to avoid therapies in patients we think may suffer.
Komen: What did you learn about specific side effects?
Schneider: Well, we learned a great deal about this one common side effect called peripheral neuropathy, or inflammation of the nerves. It results in a number of symptoms like numbness or tingling, and it can make seemingly simple tasks (like brushing your teeth) really challenging. And even worse – it can be irreversible. Our study revealed one biomarker in particular in patients who were more likely to develop this side effect, which could be extremely important information when patients are making treatment decisions.
We also found that African-Americans are much more likely to experience neuropathy. We actually found a gene specific to this population that could indicate which individuals are at increased risk – again, vital information for treatment decisions.
Another serious side effect we discovered a great deal about was congestive heart failure. It’s more rare, but absolutely terrible if it does happen. We were able to identify a biomarker that indicates increased risk of this side effect as well.
Komen: You clearly had patients’ needs at the center of your work. Can you tell us about the role patient advocates played in this study?
Schneider: Having patient advocates on the grant is an amazing asset. They not only help develop the project aims, but keep us grounded about what matters to patients. For example, our initial goal was to identify who might benefit from bevacizumab. Unfortunately, we found that this particular drug probably won’t be important for breast cancer. But, our patient advocates pointed out that we could still use the amazing genetic and treatment data we had gathered to ask other important and meaningful questions, such as who might suffer the most from treatment side effects, and get valuable information for patients.
Komen: What do you want people to walk away knowing about Komen and this Promise Grant?
Schneider: None of this work would have happened without Komen’s funding. Komen is one of the few organizations that recognize that it’s not all about discoveries at the molecular level. The more important question is: how will we take these findings and make it relevant to patients? Komen has been amazing at supporting work like this Promise Grant which is directly focused on making an impact in patients’ lives.
As far as what’s next – honestly, we have a long way to go. I wish we could say we’ve cured cancer and minimized all side effects, but we still have more work to do in terms of understanding how these biomarkers affect treatment regimens, and how we can take this to the patient and into clinics. Until we get there, we’ll continue to need support from organizations like Komen and individuals everywhere who help make this work possible.
The thought that it might be breast cancer never crossed Kathy’s mind when she felt an excruciating pain in her chest last November. After working as a nurse and then hospital president with the Franciscan Health System in the Seattle area for 26 years, Kathy Bressler had just accepted an exciting promotion with the same company, and was planning a move to Omaha, Nebraska.
She thought the sudden and burning pain she felt may have been a ruptured muscle – after all, her pain ultimately went away, and it’s a common thought that “if it hurts, it’s probably not breast cancer.” But after encouragement from her husband, she went to get a mammogram. It came back clean, and Kathy was ready to move on with the next chapter of her life. But the results of a breast ultrasound, which revealed a 1.7 cm tumor near the surface of her skin, set her life on a new path.
Kathy is no stranger to breast cancer, losing both her mom and grandmother to this terrible disease. She had been actively involved with Komen Puget Sound: racing, walking, serving on their Board of Directors and as Board President– doing anything she could to help end this disease.
Now faced with her own diagnosis, Kathy knew she wanted to put breast cancer as far behind her as possible, opting for a bilateral mastectomy (despite being a candidate for less extensive surgery). The surgery revealed three more tumors that had gone undetected, and the pathology report came back: triple negative.
Even though TNBC only accounts for approximately 15 percent of all breast cancers, Kathy was still surprised to learn that her recommended course of treatment would include the same chemotherapy her mother received… 25 years ago.
Triple negative breast cancer (TNBC) is difficult to treat because of what it lacks: estrogen receptors (ER), progesterone receptors (PR), and human epidermal growth factor 2 (HER2). These three types of receptors drive the majority of breast cancers, and as a result, established therapies that target these receptors are ineffective against TNBC, making it especially difficult to treat.
While great progress has been made in treating many forms of breast cancer, current treatments for TNBC often target all of the actively dividing cells in the body (including the healthy ones!) resulting in inadequate tumor responses and often severe side effects.
This aggressive subtype of breast cancer also disproportionately affects women with a BRCA gene mutation, young women and African-American women. There is great urgency in the breast cancer community to better understand and treat this aggressive type of breast cancer – to offer women like Kathy and so many others better treatment options.
Susan G. Komen has invested more than $98 million in research and clinical trials focused on TNBC, including over 60 active research grants covering everything from the basic biology of a TNBC breast cancer cell to promising treatments that are currently in clinical trials. Here are five projects that we are particularly excited about:
- Komen Scholar Dr. Jennifer Pietenpol of Vanderbilt University has discovered 6 different subtypes of triple negative breast cancer, each with unique genetic differences. These differences could be used to develop targeted therapies for TNBC, which are lacking as treatment options. Dr. Pietenpol is currently developing clinical trials to test these targeted therapies.
- Dr. Giorgio Seano, a young investigator at Massachusetts General Hospital, is working to improve the effectiveness of traditional radio- and chemotherapy in TNBC by testing a newly identified drug that may reduce the overgrown network of blood vessels known to strengthen and support these breast tumors.
- Another Komen-funded young investigator, Dr. Kareem Mohni of Vanderbilt, is using big data approaches to identify genetic characteristics of TNBC tumors that may be most responsive to a promising new drug combination.
- Also at Vanderbilt, Dr. Justin Balko is tackling the question of how to best prevent recurrences of TNBC following neoadjuvant chemotherapy followed by surgery. Dr. Balko is studying TNBC cells that survived chemotherapy to identify potential drug targets that could be exploited to take down these highly resistant cells.
- Finally, Dr. Max Wicha of the University of Michigan received a Komen Promise grant to study the role of breast cancer stem cells in TNBC, and whether the increased presence of these cells in women of African descent may contribute to the increased likelihood of developing TNBC in these women. Dr. Wicha is also testing several potential drugs that target breast cancer stem cells in early stage clinical trials.
This groundbreaking research will bring new options and hope for the thousands of women and men facing TNBC around the globe. But until we get there, we think Kathy said it best:
“TNBC is rare, so I understand why we don’t yet have all the answers. But it’s out there, it’s still happening and it’s really aggressive. It’s not the end of anything – it’s the beginning of a new journey. Yes it will change you forever, but it doesn’t have to be for the worse.
“And to those who ask why I lost my hair, I say, because we don’t know enough yet, so pull out your pocketbook! Until it’s no longer 1 in 8, we must continue this fight, we must continue to raise awareness and dollars, and we must continue to walk until we’ve ended breast cancer once and for all. ”
Komen has worked with public health and political leaders for more than 30 years to push for broad, systemic and lasting changes in the fight against breast cancer. We engage policymakers at every level of government to make sure breast cancer is a priority, giving a voice to more than 3 million breast cancer survivors in the U.S. and those who love them, in Washington, D.C. and every capital across the country.
We were delighted when President Obama announced a new Cancer Moonshot initiative led by Vice President Joe Biden – an initiative that aims to accomplish a decade’s worth of advances in the fight against cancer in five years. Our President and CEO Dr. Judy Salerno declared Susan G. Komen “ready, willing and able,” eager to lend the resources and expertise we’ve gathered in our more than 30 years to push progress across the cancer spectrum and realize our vision of a world without breast cancer.
Releasing his Fiscal Year 2017 budget earlier this week, the President included a $1 billion (3.2 percent) increase for the National Institutes of Health (NIH), including a $680 million (13 percent) increase for the National Cancer Institute (NCI), to fund the Moonshot.
But as is so often the case, funding new programs means “compromises” have to be made – and unfortunately it came in the form of a 20 percent reduction in funding for the National Breast and Cervical Cancer Early Detection Program (NBCCEDP).
While health care reform has increased access to breast and cervical cancer screening services for many women, the program was only reaching one in 10 eligible women at last year’s funding levels.
As a country, we cannot afford to lose funding for this program which provides vital, high-quality breast and cervical cancer screening services to low-income women in every community – women who would otherwise be unable to afford it. Even before budget details were released, ensuring funding for the NBCCEDP was among Komen’s top advocacy priorities.
Our 2016 advocacy priorities, identified as the policy issues that have the greatest potential impact on Komen’s mission, include:
- Support expanded federal funding for all biomedical research, especially breast cancer research at the National Institutes of Health (NIH) and Department of Defense (DOD);
- Support state and federal funding for the NBCCEDP;
- Advocate for policies to improve insurance coverage of breast cancer treatments and screening, (specifically, increased access to drug therapies and limiting out-of-pocket costs for diagnostic mammography); and
- Evaluate state and federal policies to increase awareness, education and access to clinical trials for all patient populations.
As the 114th Congress and state legislatures reconvene, Komen will work to ensure that these issues – and the millions of individuals they affect – are top-of-mind for policymakers everywhere. Because as the President’s budget revealed, our work is as relevant and important as ever.
We look forward to working with staff, volunteers, grantees, researchers and friends in communities across the U.S. to ensure that breast cancer issues are front and center – and to a successful 2016!