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Breast Self-Exam: An Opportunity for Early Detection or Anxiety?

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Believe it or not, breast self-exams have often been criticized for causing undue anxiety and doctor’s visits for many women.

These critics of breast self-exam argue that many women are normally lumpy and bumpy, and so self-exam can lead to worry and anxiety about what they are feeling. My opinion is that every woman should know what is normal for her own body (not just her breasts), and perform self-exam once a month.

Breast Self-Exam How-to | Breast Cancer CheckKnowing your body’s “normal” will increase the chance that you would find a new lump that is not normal, and approximately 10-15% of breast cancers are not seen on mammograms.  Doctors would never tell a woman (or man!) not to be familiar with what’s normal for any other part of the body, so why stop at breasts- especially when recognizing an unfamiliar lump could alert you to something a mammogram may miss?

Both men and women are advised, for example, to be familiar with skin changes and moles so that if something new develops, a skin cancer could potentially be detected early. Breast exam should not be an exception to this: the more familiar you are with what’s normal for you, the higher the likelihood that you would identify something that’s not normal, and the lower the likelihood that self-exam will lead to unnecessary anxiety and worry.

And I’m hardly the only one who believes this. From nationalbreastcancer.org:

Johns Hopkins Medical center states,

“Forty percent of diagnosed breast cancers are detected by women who feel a lump, so establishing a regular breast self-exam is very important.”

​”…​when combined with regular medical care and appropriate guideline-recommended mammography, breast self-exams can help women know what is normal for them so they can report any changes to their healthcare provider.”

Breast self-exam is most certainly an opportunity for early detection. The more you know your body, the better able you’ll be to take care of it!

 

Evening at the Dubin Benefit Gala

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Pictured (left to right): Chloe Moussazadeh, Dr. Elisa Port, Eric Gantwarg, Dr. Eva Andersson-Dubin

Pictured (left to right): Chloe Moussazadeh, Dr. Elisa Port, Eric Gantwarg, Dr. Eva Andersson-Dubin

Last month, the Dubin Breast Center held its Fifth Annual Benefit Gala, an event I felt honored to attend. The Dubin Breast Center opened in 2011 as part of  Mount Sinai, one of the nation’s top-ranked hospitals, and it is regarded not only for its excellent doctors and specialists but also for its focus on holistic health and the overall wellbeing of its patients. As co-director of the Center, I am so proud that our patients can receive highly personalized, multidisciplinary care in such a calming and supportive place.

And the Benefit Gala was a celebration of just that: our incredible patients and their care. They are why we go to work every day. They are our inspiration.

Among our biggest inspirations is Chloe Moussazadeh, who we honored at the Benefit Gala with our Courage Award. Watch her story below:

All of the proceeds from the event went toward the Dubin Breast Center so that we may continue providing our amazing patients with the best care possible. Aside from the proceeds, the Gala is a chance for my fellow doctors and I to celebrate the past year with our colleagues and patients, and I am so excited for what we can accomplish and celebrate in 2016.

Why I wrote The New Generation Breast Cancer Book

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I wrote this book not to add to the vast amount of information and number of books on breast cancer that are already out there. I wrote this book to fill what I perceived, based on what I see in my office every day, as a need for a specific kind of breast cancer book that did not exist.

The age of “TMI”

Thirty years ago, when our mothers and grandmothers were diagnosed, women didn’t even talk about “the big C.” Or if they did, they would literally whisper the word “cancer.” Twenty years ago, when I first entered the breast cancer field, access to information about breast cancer for the general public was still fairly limited. There was really no internet, only a few books on the market, and significantly fewer options for treatment.

computerFast-forward to today. There is no shortage of information out there if you are newly diagnosed with breast cancer. And it’s really the Internet that has definitely been the game changer, though not always in a good way. The internet, email, and social media have changed the way we do everything on a day to day basis, make travel reservations, communicate, even date (swipe left, swipe right- I have no idea what that even means), and it has definitely changed the world a woman and her family and friends face when she is diagnosed with breast cancer.

When a woman types the words “breast cancer” into her browser, she is faced with literally millions of pages. Women are  blogging and tweeting to chronicle their journeys through treatment; I have patients who send Instagrams from their chemo chair. And if you want to know about recovery from a mastectomy, just visit one of about 100 different breast cancer chat rooms online and you will get lots of input from many who have been through it.

So the problem isn’t access to information anymore. Instead, it’s too much information- too much information with no filter.  And keep in mind with breast cancer treatment there is no one-size-fits-all, so a woman newly diagnosed with breast cancer has no way of figuring out what, of the inundating information she is getting, is relevant to her particular case. And so here’s what I was seeing as the problem: Getting information is supposed to be empowering, but without the right guidance it can actually be overwhelming, having the opposite effect.

A real reason for hope

Add to that that women diagnosed with breast cancer over the last decade have had every reason to be optimistic about their outlook. The cure rate is the highest that it’s ever been, between 2000-2010 the death rate from breast cancer dropped almost 2% per year, so that the overall 5-year survival rate for breast cancer today is 90%.

For a woman with breast cancer, the overwhelming likelihood is that she will survive, and thrive. But for many women its very hard to hear this message of optimism against all the background noise that’s out there. I found that women were coming into my office with more doom and gloom than ever before, devastated by the scary stories they were reading on the internet, and overwhelmed and defeated before they even got started. And when they came into my office they had reams of internet print outs with post it notes flapping off of certain pages, highlighted in 3 different colors. They were all seeking guidance on what to read, and I didn’t have a great answer. It was the disconnect between the optimism and hope I was trying to instill based on the statistics and all the great treatment options we have to offer, and the fear and hopelessness that I was seeing more and more of, that made me think I should write something.  What I wanted for them was a book on breast cancer, one that provided guidance in an optimistic, calming tone, that was geared toward navigating diagnosis and treatment for this new generation: the age of TMI.

Advice every woman needs to hear

The book starts out with chapters on subjects that all women, not only those with breast cancer, might find informative: screening guidelines and the many controversies over mammography, ultrasound and MRI. It also defines who is at risk for breast cancer, what constitutes increased risk, and addresses options for reducing risk. There are chapters addressing genetic testing and discussions on whom should seek testing. There are chapters on the rare disease of male breast cancer, and life style factors that affect risk for breast cancer and overall health.

Elisa Port MD with breast cancer patient

But as the book takes a woman through the journey of breast cancer, I tried to do so with specific messages and insider’s advice that I think every woman with breast cancer needs to hear. These messages and pieces of advice represent what I hope will differentiate this book from what is already out there. For example, reinforced throughout the book, in discussions of every aspect of care is the message to always, always, always remember that no two cases are the same.

With breast cancer, every case is different. And even two women who seem to have the same diagnosis may have cases that differ in subtle ways, making a big difference in treatment options or recommendations. Because of this, there is a limit to what one can learn about her disease from the internet, an article, or even a friend who seems to have “exactly the same thing.” So when a woman leaves my office, and her best friend starts asking, “how come your doctor didn’t order a PET scan, mine did,” and “how come you are having a lumpectomy? My doctor told me mastectomy was the only right choice,” that woman needs to remember that her friend’s treatment is not necessarily relevant to her’s. If a woman can insulate herself even a little from this type of background noise, she can avoid the doubt and questioning of the very sound choices she had made with her doctors for her particular case.

Reaching beyond my patients

Dr. Elisa Port in the operation roomMy final goal of writing the book had to do with helping women beyond those that I take care of personally. The Dubin Breast Center at Mount Sinai Hospital, in my opinion, is a model for the highest level of care a patient with breast cancer can get: all the aspects of care under one roof, and in a calming, caring, and personalized environment.  And there are top-notch breast centers across the country for women newly diagnosed with breast cancer. For the hundreds of thousands of women who cannot come to the Dubin Breast Center or a place like it, I hope this book gives women an idea of what they should seek out and strive for in the care that they receive.

In summary, I wrote to address the paradigm shift of information overload and how it has changed the experience of being diagnosed with breast cancer. I hope many people will read it and find it helpful, not only those with breast cancer but friends and family members seeking to support them. One in eight women- and some men too- will be diagnosed with breast cancer over their lifetimes, so we will all be affected either directly or indirectly in some way.

Responding to the new ACS mammogram guidelines

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Along with everyone else, I heard about the American Cancer Society’s new breast cancer screening recommendations last Tuesday morning when the news broke. The society no longer recommends that women at average risk between the ages of 40 and 44 have mammograms and advises reducing the frequency of mammograms from every year to every other year for women 55 and older. The group is also recommending ending physical breast examinations by doctors entirely.

The timing was interesting because, coincidentally, I had attended the American Cancer Society’s Mothers of the Year Luncheon the day before the announcement. My colleague, Dr. Susan Drossman, was receiving the award that I too had received a few years prior. When we heard about the society’s change in guidelines, Susan and I knew we needed to respond. We were concerned that an organization we were supporting and standing for, one that we thought shared our goals of early detection of breast cancer, improved treatments, and saving lives, was sending a confusing message that no longer seemed to prioritize these same endpoints. Along with our colleague Dr. Emily Sonnenblick—another Mother of the Year—we rapidly worked to articulate our perspective in an editorial for The New York Times.

New York Times Annual Mammogram American Cancer Society

I hope you will read the full op-ed here.

 

Breaking down the JAMA DCIS study

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In late August 2015, a new breast cancer study was released in JAMA (a prestigious medical journal). It was covered extensively in the media, generating much communication from patients, as often happens when new data hits the press. As women with breast cancer know, the flood of information, medical jargon, and numbers can be pretty overwhelming, and often times confusing.


 

NYT JAMA Study


 

In this case, the study involved patients with DCIS (ductal carcinoma-in-situ), the earliest form of breast cancer. The main, take-home message I believe should be derived from this study is that for women with DCIS, the overall long-term survival is excellent: 97-98%.  This is good news, and all women with DCIS should keep this point in the forefront of their minds.

And there is more good news. Because there have been so many advances in the care and treatment of breast cancer in general—not just DCIS—there are more options than ever before in taking care of women with breast cancer. As surgeons and oncologists, our job is to decide which options are medically appropriate and then help a patient decide which is best for her as an individual: lumpectomy or mastectomy? Mastectomy or bilateral mastectomy? Chemotherapy or hormonal therapy? Or both? It’s not easy to navigate these pathways, but with the right guidance and the right team of doctors, the outcomes are usually very good, and the results from the JAMA study verify this fact.

But when the JAMA study came out, the women who called my office did not feel this message of optimism. Mostly, there was confusion and anxiety. And there were two specific concerns that I heard over and over again that I want to shed light on in a way that I hope is helpful and clarifying.

Here are the main questions I received and my answers:

1) I had a mastectomy for DCIS. Do the results of this study mean I was “overtreated” and would have had the same outcome with lumpectomy?

Not at all. Often times, the outcomes of a study are emphasized, while the study’s design isn’t clearly articulated. With JAMA, one of the biggest sources of confusion was that it was not clearly explained or emphasized anywhere that patients in this study were not randomly assigned to different treatments all ending up with the same excellent outcomes. Many patients included in this study were advised to undergo particular treatments based on what their doctors felt was the best approach after considering the specifics of their particular case.

For example, often women who have large areas of DCIS in their breasts that would be difficult to remove in a small operation are advised to undergo mastectomy. With mastectomy, a woman with DCIS has an extremely low risk of cancer coming back, and an extremely high likelihood of survival. To assume that you could take this same woman with a large area of cancer, perform a lumpectomy (thereby possibly not removing all the cancer) and expect the same outcome would be completely wrong. And in no way did this study show that this would be reasonable to expect. And there are other mitigating circumstances that may lead us, the surgeons, to advise a woman to have a mastectomy. For example, women with the BRCA gene mutation are at much higher risk for cancer recurrence after lumpectomy, and mastectomy is frequently advised. Yes, for some women both lumpectomy and mastectomy would be associated with equal outcomes in their particular cases, and some of these women choose to have a mastectomy. For these women there are other factors that drive decision making beyond just equal survival rates, and in my experience, the choices my patients make are usually well thought out and made after careful consideration and consultation regarding the risks and benefits of all their options.  

To reiterate, there is no one-size-fits-all. And this holds true for women with DCIS as much as for any other scenario. So my interpretation of this study? Perhaps one reason why all groups had good outcomes was in part because we, the surgeons, are making reasonably good recommendations as to who should receive which type of surgery, by working with our patients and figuring out the best course on a case-by-case basis.

2) If more extensive surgery and treatment did not lead to better survival does that imply that having no treatment at all (i.e., “watchful waiting”) is equally as acceptable?

Absolutely not. The women included in the JAMA study all underwent treatment of some sort, which ranged from lumpectomy alone, to lumpectomy with radiation, to mastectomy. And with appropriate treatment, excellent outcomes can be expected. The same cannot be said for doing nothing.

The comparison between DCIS and prostate cancer where the watchful waiting approach has been adopted to some extent has been offered up as a model to follow for DCIS patients, but in truth, it is not a good comparison to make for many reasons. First, men with prostate cancer for whom watchful waiting is recommended are often elderly and infirm, with other concomitant illnesses that have a higher likelihood of causing death before their prostate cancer progresses. Second, surgical treatment for prostate cancer, a prostatectomy, is associated with a significantly higher risk of serious operative complications (compared to the operations we perform for breast cancer) and one might think twice before recommending this course of action for someone elderly or infirm. There is no question that we, as breast surgeons, also think twice before recommending extensive or aggressive treatment for our older female patients, especially when they have other co-morbid conditions. But to assume that a 45-year-old otherwise healthy woman would have no progression of her DCIS over the ensuing

40 years (the current lifespan of the average woman in the United States is approximately 85 years old) is potentially dangerous. Equally as concerning is the assumption that if no treatment is given, and disease progresses, there is a guarantee that it can be treated later with no compromise in cure or change in outcome. Progression of DCIS to spread throughout the breast or progression from DCIS to invasive cancer is a potentially catastrophic development that could lead to the need for even more aggressive treatment than what was originally feasible: women who were lumpectomy candidates may now require mastectomy. And women who would not have been recommended to have chemotherapy based on DCIS, may now require it for their invasive cancer.

The point is, watching and waiting involves a little bit of Russian Roulette. And anyone who claims that he/she can be even reasonably sure of equivalent excellent outcomes with the “no treatment” approach has absolutely no basis for making these claims. True, there may be individual cases among the 60,000 women diagnosed with DCIS each year where watching and waiting may be appropriate, where there is no progression, and the disease is stable for years and years. But no one currently has the tools or tests to identify or accurately predict which cases fall into this category. This is an area of extensive research and we welcome the day where we can safely recommend this approach for a real number of patients.

There is another reason why the “no treatment” approach to DCIS is not a great idea, and for some reason, this important fact is never brought up or widely discussed. When an abnormality is identified on a mammogram and a needle biopsy is done and shows “DCIS,” we ultimately remove this area in its entirety (with lumpectomy or mastectomy). When we examine the tissue that was removed at surgery, approximately 10% of the time there will actually be invasive cancer in and around the area of the original biopsy. In other words, the needle biopsy under-estimated and under-sampled the true extent of disease. So if 100 women went untreated for what was “DCIS” on the biopsy, 10 of them would actually be undergoing no treatment for what is actually invasive cancer. In this country, one of the most common cancer-related lawsuits is failure to diagnose or treat breast cancer. The hypocrisy here is undeniable: we can’t advocate for not treating what may be potentially life-threatening cancer on one hand, yet permit lawsuits for failing to diagnose and treat it on the other.

So when discussing the “watching and waiting” approach for DCIS, one very real question that first needs to be answered is, “How do we know for certain that it’s just DCIS?” And the answer is: we don’t. Women considering a “no treatment” approach to DCIS must be made aware of this important caveat.

For the millions of women who have been treated for DCIS and the approximately 60,000 that will be diagnosed this year and the years to come, DCIS is the most curable form of breast cancer with cure rates of approximately 97%, and with the right care, a woman with DCIS has every reason to be optimistic and expect an excellent long-term outcome. Through research, progress has been and will continue to be made, and more and more options will become available. Perhaps one day soon, with research leading the way, we will be able to confidently advise a large proportion of women with DCIS that “no treatment” is a safe and viable option. Believe me, even those of us who make our living by performing breast surgery would welcome that day. But that day is not today.

For now, we who are on the front lines of cancer treatment taking care of women (and men) with breast cancer every day look at each case in detail and work with each person to decide jointly what is best for each particular case. This study reaffirms that the treatment options for DCIS that my colleagues and I recommend and then perform are effective and curative, and this is gratifying to know. And the treatment choices that we and our patients make together are sound and should not be a continued source of anxiety, confusion, and second-guessing.