Dr. Susan Love’s Research Foundation Teams Up

I received this in an email yesterday from Dr. Susan Love’s Research Foundation. Leave it to Dr. Susan Love to bring together Susan G. Komen, the Young Survival Coalition, and the Dr. Susan Love Research Foundation to collaborate on the collateral damage and side effects of Breast Cancer as part of the Health of Women (HOW) study. This is so exciting to have breast cancer organizations working together. Dr. Susan Love not only wrote about this concept but she is taking action.

There’s still time to participate with questions in this study so please read the release that Dr. Susan Love sent and get all of this great information including how you can join the conversation with Dr. Susan Love on Facebook, Wed October 2 at 9am Pacific Time and/or Twitter at 1:00 Pacific time.

Dr. Susan Love Research Foundation Teams with Susan G. Komen and Young Survival Coalition to Document the Collateral Damage of Breast Cancer

Image 2We’re pleased to announce the groundbreaking collaboration of three breast cancer powerhouses to document the short- and long-term physical and emotional side effects of breast cancer treatments as part of the Dr. Susan Love Research Foundation’s Health of Women [HOW] Study.

Those of you who have been following Dr. Love’s recent blog posts are aware of  the outpouring of interest in documenting the collateral damage of today’s breast cancer treatments and many of you have already participated by providing key questions about your own experiences.

More data needs to be collected to provide the scientific community with the most robust cohort from which to derive and analyze the true cost of the cure. In the spirit of collaboration, the Dr. Susan Love Research Foundation reached out to Susan G. Komen and Young Survival Coalition as well as other advocacy groups to ask for their help in spreading the word.

YoungSurvivalCoalitionLogoSusan G. Komen and Young Survival Coalition have agreed and are inviting their constituents to share their experiences with collateral damage from treatment and to participate in the HOW Study as a means of identifying the causes of, and prevention strategies for breast cancer. This groundbreaking collaboration also demonstrates that different breast cancer organizations can work together on important issues.  We welcome all breast cancer and cancer groups to join us.

HOW_Logo_onlyQuestions about collateral damage from breast cancer can be submitted through October to http://www.questionthecure.org. Anyone interested in being part of this initiative can register for the Health of Women [HOW] Study and complete the basic questionnaires on personal health and/or breast cancer diagnoses. When the collateral damage module is complete and online, participants will be notified by email.

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To give you an opportunity to learn more about this groundbreaking collaboration, Dr. Susan Love will host a Facebook chat (Wednesday, October 2 at 9:00 a.m. PDT) and a Twitter chat (Wednesday, October 2 at 1:00 p.m. PDT).

It is time to work together!

I found this great post on Dr. Susan Love’s “Act with Love” blog. She really put in to words everything that is going through my mind in hopes of all of us who care about breast cancer advocacy working together so that we can make a difference. I am glad Dr. Susan Love reminded us that we can have difference’s of opinions on things, yet still work together on mutual projects that we care about. I have always believed that “United we stand, divided we fall.” This post that I re-blogged is so inspiring and well worth reading!
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It is time to work together!

By On Wednesday, September 4, 2013 · 

As the summer wanes and October looms, I am struck once again about the fragmentation of the breast cancer advocacy movement.  The history of activism dates well back to 1952 and the American Cancer Society’s Reach to Recovery when a doctor had to give permission for a post mastectomy woman to be seen by a volunteer, lest she be too distressed by the encounter.   The Susan G Komen Foundation (now Komen for the Cure) started in 1983 to raise awareness. Others, such as the Women’s Community Cancer Project (Cambridge, Massachusetts), the Women’s Cancer Resource Center (Oakland, California), Breast Cancer Action (San Francisco), Y Me (Chicago), Mautner Project for Lesbians with Cancer (Washington, D.C.), and NABCO (New York) were focused on education and political action.  As these groups sprang up around the country, it served as a tipping point in the battle for attention to the problem of breast cancer.  These heady days led to the for the formation of the National Breast Coalition (1991), Department of Defense Breast Cancer Research Program (1992), the National Action Plan on Breast Cancer (1993), the California Breast Cancer Research Program (1993) and the Breast Cancer Stamp (1998). Many good women and men contributed to these early successes and we stand on their shoulders and by their sides.

Now as we head into October, anticipating the arrival of the pink tsunami, in some ways it feels like the original battle to end breast cancer has been co-opted by these annual celebrations of survival.  The messages are incessantly upbeat and rarely mention that many women still go on to metastasize, many still die, and the “survivors” live with a new normal based on the collateral damage caused by their treatments.  My recent experience with Leukemia has made me impatient and dissatisfied with the status quo.  While many programs, such as the National Breast Cancer Coalition’s Deadline 2020 and our own Army of Women, are valiant efforts to move us to the goal, it is going to take more than that to get there.

The goal of ending breast cancer is too important to leave to any one group or approach.  I think it’s time for the breast cancer organizations and foundations to start working together on projects that make sense.   We need to find opportunities to collaborate and speak with one voice. We don’t need to agree on everything, but we do need to rise above our differences to find ways and projects that we can work on collectively. Only by working together will we ever be able to achieve the overriding goal we all share– a future without breast cancer!

Notes from Dr. Susan Love Speaking at the Summit

I really enjoyed hearing Dr. Susan Love speak at the Inaugural Advocate Leadership Summit. For starters it was such a thrill and so exciting to see her after knowing that she went through intense treatment including chemotherapy and surgery for leukemia. I always feel so uplifted when she talks about breast cancer and opens our minds to see things with a fresh perspective. She raised some great points. I took my notes and I hope I am reflecting what she spoke about in the best way possible to help others read what she had to say.

susan-love-cancer-20130213-001She spoke about breast cancer today, and the damage of treatment and over diagnosis. She said with our goal of finding every tumor even those that are just DCIS and have not progressed to cancer, is like the TSA screening. We are in a climate of over treatment where we tend to slash, burn and poison. Then when we have recurrences we have done so much treatment that it could reduce the treatment’s effectiveness. She acknowledges that doctors roles are to find things. Yet 29% of cancers would not kill. Only 20 -30% will become invasive. We over treat and over test. We are in a climate of more is better. We use MRI, PET CT, and Markers. All of this equals finding reasons for treatment. So we do surgery, radiation, chemo, and hormone targeted therapy.

Yet we never think of not doing a treatment or subtracting from a treatment plan. We just throw everything we can at whatever we find. She talked about how the oncotype dx and/or the mammaprint test at least looks at whether all of this treatment is necessary. She says none of this is malicious on the doctor’s part. It’s just that no one is looking at the big picture.

For example, when patients are diagnosed, they are scared. So they listen to their doctors and do what they are told. But with all of this treatment thrown on all the over diagnostic testing and never subtracting from the treatment especially at an early stage comes in a climate of intense fear. No one is ever told about the terrible toll side effects will play on the patient from all of this slash and burn treatment. There is a huge amount of collateral damage.

Oncotype_boxMammaPrint_posevnoHaving come from doing chemotherapy herself she understands how much this type of treatment takes its toll. Side effects are always down played. No one talks about the effect of AI’s or lymphedema. At least the oncotype dx test and mammaprint test looks at whether treatments might work. It would help us to know before treatment, what all these side effects were, whether all of this treatment is necessary and if every case warranted and needed all of this treatment. Also is all this treatment going to be effective or will it just overtax the body and mind? Is anyone looking at the big picture? Can we try to predict if someone will get lymphedema before we rush to do surgery?

With radiation there is skin damage. Treatment causes muscles to atrophy. Do we make all women wear a protective sleeve on an airplane? Do we let patients know that when we take breast tissue away that there will be no sensation left in the breast? Do we tell ahead of all the pain from surgery?

There is pain from surgery. There is collateral damage from all treatment. There’s numbness, muscle atrophy, skin changes, and heart disease. With all of this systematic therapy all things have side effects. The fatigue and chemobrain lasts for years. There’s heart disease from chemotherapy. Anthracyclines can cause leukemia. These things have lasting side effects. Fertility problems, joint problems, fractures and second cancers…all of these things are real. Treatment is not a free lunch.

chemodrip.jpg.pagespeed.ic.1vc9PB_Kv3When someone is triple negative at the beginning they can do well, but statistics show that triple negative breast cancer tends to recur early on. Other cancers tend to recur later while the patients are far away from all of this intense treatment. This is where prevention makes the most sense. If we can prevent the problem in the first place and knew what the real bugs in the breast were at the beginning wouldn’t we be better off? If we understood the environment before the problems took place and we had a vaccine to prevent these problems and we really understood how to keep a normal breast before we rush to all this treatment, wouldn’t that be a better approach? If we really looked at immunology, anatomy, physiology and found new clues and new ways to study DCIS before we rushed to throw everything in the kitchen sink on it, would we need surgery for DCIS? Could 3D ultrasound help with DCIS?

Ductal carcinoma in sity (DCIS)
Ductal carcinoma in sity (DCIS) (Photo credit: Wikipedia)

Instead of continuing to follow the things as they are, we at least owe it to ourselves to be asking these questions. Instead of rushing to treatment with DCIS would it be better to see carefully what was happening before we put a patient through these treatments that have collateral damage and side effects? Tamoxifen has a lot of side effects as well as AI’s.

At least by asking these questions and trying to prevent the problem with a vaccine we would be looking at everything we are doing and starting to come up with new ways of approaching the problem instead of just following the status quo of what we are doing. We need to do this so that we can avoid all of this collateral damage and also have these treatments available in case things progressed before someone has been so over treated that when they present with advanced disease all of this has been used and is no longer effective.

28627_119149311460178_7118937_aI also asked her whether by working on a vaccine to prevent breast cancer could we also apply using this for metastatic disease by injecting someone with a vaccine and being able to turn their disease around?  She very carefully admitted that this was not her expertise and that she had just finished treatments, but she did feel that there was nothing to prevent us from trying to make a vaccine that also tackled metastatic breast cancer. Whether or not this is feasible I do not know, but what I did appreciate was hearing her perspective after going through as much as she has been through, and I am so glad that she is part of the team of trying to find answers and look at new ways that we approach this terrible disease.

It’s so great to have her back with all of us, after her treatments. She is truly someone who I admire and knows so much about breast cancer and it’s amazing to see her post treatment with so much enthusiasm for getting back to work on all of these important issues revolved around breast cancer.

Dr. Susan Love, MD, MBA, FACS is a Clinical Professor of Surgery at the David Geffen School of Medicine at UCLA, and the President of the Dr. Susan Love Research Foundation. She leads the Love/Avon Army of Women, an initiative partnering of women (and men) who are willing to participate in breast cancer research with scientists who are conducting research on the prevention of breast cancer. She is the author of “Dr. Susan Love’s Breast Book,” which is in it’s 5th edition. Dr. Love is a founding member of NBCC and her foundation is represented on the Board of Directors of NBCC. She received her medical degree from SUNY Downstate Medical Center in New York and did her surgical training at Boston’s Beth Israel Hospital.

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After realizing that some people are not aware of the Oncotype DX test or the Mammaprint test, I went to their websites and here is the current information about the tests. Of course, always discuss this with your oncologist as this is only here to help those that don’t know the latest information about these tests that is available online.

According to the Oncotype DX website:

The Oncotype DX® test is a diagnostic test that helps identify which women with early-stage, estrogen-receptor positive and lymph-node-negative breast cancer are more likely to benefit from adding chemotherapy to their hormonal treatment. This test also helps assess the likelihood that an individual woman’s breast cancer will return. The Oncotype DX test provides important information that you and your doctor may use when making decisions about treatment. Post-menopausal women recently diagnosed with node-positive, hormone-receptor-positive breast cancer may also be appropriate candidates for the Oncotype DX test.

According to the MammaPrint website:

To be eligible for the MammaPrint gene expression profile, a breast cancer patient should fulfill the following criteria:

  • Breast Cancer Stage 1 or Stage 2
  • Invasive carcinoma (infiltrating carcinoma)
  • Tumor size <5.0 cm
  • Lymph node negative
  • Estrogen receptor positive (ER+) or Estrogen receptor negative (ER-)
  • Women of all ages

Hope from the NBCC Deadline 2020 Advocate Summit and Lobby Day

As I returned home from the NBCC (National Breast Cancer Coalition) Advocates Summit and Lobby Day to end Breast Cancer Deadline 2020, I was really happy I went. I have to admit I had so many reservations going. I labored over my decision. I thought I was going to fly home with “Frustration – Part Two.” There’s been a lot of people angry with the NBCC because of issues about putting MBC (Metastatic Breast Cancer) under the bus literally. My fearless friends have real reasons to be upset. Here is an organization that has educated so many women who have had to hear the words “You or a loved one has breast cancer.” They have an incredible program called Project LEAD which is an intensive six-day course teaching the science and very important advocate issues about breast cancer.

MusaSmI have learned a great deal from Project LEAD, LEADcasts, summits and attending Breast Cancer Symposiums that stemmed from first learning with the NBCC about breast cancer. Great scientists, researchers, doctors and leaders of breast cancer advocacy taught me the grim statistics that now in the US alone 108 women die a day of MBC (metastatic breast cancer). That’s one woman every 14 minutes. There are also men but the stats are less. In 1975 there were 112 deaths a day in the US from MBC. It’s 2013. Four less deaths a day is not much progress when it comes to death rates.

So here was my dilemma. The NBCC who taught us about the death rates has a campaign to end breast cancer in 2020. So what happens to the metastatic patient while they figure out how to get a vaccine to end breast cancer?

There has been a lot of differences of opinion within the breast cancer community and understandably so. If you are only preventing breast cancer and preventing metastatic breast cancer what of the person diagnosed as metastatic. The very people they say they are helping…Are they really helping them?

I went to symposium expecting to come home finished with them. But my mind was open. I saw that Musa Meyer was going to the conference. She is the head of the advanced metastatic breast cancer organization. She is committed to the advanced breast cancer community and through her website http://www.advancedbc.org and the BCMets,org online community Musa focuses daily with BCMETS.org by helping women with MBC and their families understand treatment options and emerging research.abc

There was also an impressive line up of speakers. Dr Dennis Slamon gave a great talk. He is best known for being instrumental in the identification of the Her2/neu oncogene and the resulting treatment of tratusunab (Herceptin) which has been hailed as the first triumph in an emerging wave of targeted therapies. Some other speakers included Dr. Susan Love, Dr. Michael Baum, Dr. Peter Lee, and Dr. Barrett Kramer to name a few. In my next post I will be writing more about what some of these speakers spoke about.susan-love-cancer-20130213-001

Shirley Mertz of the MBCN (Metastatic Breast Cancer Network) was also at the conference. If leading metastatic breast cancer patients and their organizations were getting behind the deadline, and I have always supported the NBCC, I owed it to myself and Advocates for Breast Cancer to attend and make up my mind.

The most moving plenary session I attended was called “Effectively Targeting Metastasis in Breast Cancer.” First Shirley Mertz spoke to us, endorsing Deadline 2020. She talked about the differences between early stage breast cancer patients and MBC. 80-90% of all breast cancer patients start at early stage breast cancer. Early stage can be anything from DCIS (ductal carcinoma in situ) which is pre-cancer and a little more complicated but for this post I will leave the explanation as that. Early stage cancer can also be cancer that is contained in the breast where someone might only need a lumpectomy or a mastectomy and/or radiation depending on the size of the tumor and whether there is lymph node involvement. Otherwise another early stage breast cancer is when the cancer travels to the lymph nodes and the patient could have a lumpectomy, chemotherapy and/or radiation and/or a mastectomy but the most important thing to understand about early stage is that one is told they have a 70% chance of survival and many do whatever treatments that are recommended or they feel will work and after treatment some prescribed medications depending on their pathology. Some also choose alternative therapies. For most early stage patients, when they “finish primary treatment”  and are told they have NED (No Evidence of Disease) they can have the chance of knowing they may be “cured.” Then they are told they have a 30% chance of a metastatic recurrence that can happen at any time, but at least there is an end point to the treatment. Of course there are many side effects and I am oversimplifying “treatment” as an end point but I am trying to show the differences between early stage breast cancer and MBC. MBC is chronic and so far there is no known “cure”.

IMG_5124Shirley explained about how she goes for chemotherapy infusions and where she goes there are early stage patients getting chemo and when they get their last treatment they have a special bell and everyone celebrates their end point of chemotherapy treatment. When one has metastatic breast cancer there is no end point to treatment so Shirley remembers the joy of knowing there was an end point but unfortunately for the MBC patient this will never happen. There are also people with inflammatory breast cancer which is an unbelievably aggressive form of breast cancer that many do not survive. Again for simplicity I am just trying to show the many differences that exist in breast cancer diagnosis and treatment options.

After Shirley Mertz, Suzanne Faqua PHD continued talking with us about the science involved and critical issues in metastasis research. Suzanne is a professor in the Lester and Sue Smith Breast Center at the Baylor College of Medicine. She specializes in metastatic research especially working with hormone positive MBC.

She explained the way current science recognizes the need to study not only the primary tumor but looking at the similarities and differences of the heterogeneity of a metastatic tumor. As we look at the critical issues in metastatic research our approach is important. For optimal targeted therapy we must identify key pathways (key drivers), block the pathway completely, anticipate escape mechanisms and block them too, and explore combination therapy. She talked about studies related to PIK3CA status in blood, liquid biopsies, circulating tumor cells and how we must do targeted therapies in human trials. Her talk had some of the complicated science involved with tumor dormancy, including the fact that there aren’t current dormancy-cell killing drugs in clinical trials. This needs to change.

Some of her personal perspective of the critical issues in metastasis research includes the need for us to get the pace moving. We have to change the dogma that “The horse is out of the barn” so we can prevent metastasis. There is a lack of clear “drivers” to target. Suzanne also spoke about how important it is to now understand the metastatic tumors and be able to collect tissue samples from biopsies of metastatic tumors and analyze them. Apparently there is a problem within the research community where the researchers want to study the tissue samples from metastatic tumors and how there is difficulty getting theses samples. The woman sitting next to me said she gave her samples and is disappointed that researchers aren’t getting their samples. Another problem is funding. Negative funding will slow and halt progress. That’s why Lobby Day was so important and we also need to keep the program at the DOD (Department of Defense) going so we continue vital research especially when it comes to metastasis.

The NBCC is going to have a special meeting in June with scientists, doctors and metastatic breast cancer patient advocates to study metastatic breast cancer and tumor dormancy. The science is complicated. But someone explained to me that the basics are if the scientists can take the metastatic patients and get their metastatic tumors to go back to sleep and not spread any further, they can go on to live with the disease for many years. The best way I can understand and explain it is that with AIDS they have not found “the cure” but they have found medications that allow people to continue to live with AIDS and they can live for a very long time.

This information is very important to me. I know I have written about the death of my best friend from MBC who survived and thrived through primary chemo with me and lived as long as she could with triple negative MBC. I have so many friends with metastatic breast cancer now, and met some really special new friends at the conference and I have written about how upset I am that they need to have more money dedicated to metastatic research.

One of the difficult things in the breast cancer world is that different organizations have different agendas. Sometimes there are clashes. I am someone who wants everyone to work together. I believe in teamwork. It is the spirit of teamwork that helps me understand the mistakes of the past with breast cancer and pink culture yet try to move forward with my advocacy.

This is what I gained from the people who are committed to deadline 2020. Advocates are working in every way they can to see an end to this disease so that we don’t have to have our sons and daughters hear the words “you or a loved one has breast cancer.”pink_425x320

I understand that some people are moving on from the NBCC and others like me and many of my new friends that I met in DC are supporting the NBCC. For those that don’t want to support them, please know I understand your point of view and I am not going to tell anyone they have to feel the same as I do. This was my experience at the conference. This is what I went away feeling that I am doing what I believe is right for myself and my organization. I am passionate about my advocacy and making a difference with breast cancer and nothing will change that. I hope that one day this horrible disease can be contained and women can go on to live happy productive lives with the most quality of life that they can as result of the scars that come with this disease.

I respect that others see some of what the NBCC is doing with a different lens. When it comes to our passion and intentions, we are all on the same side. What is most important is that we respect each other and work towards ending this disease in every form while we continue to place much emphasis on metastatic research.

Setting a deadline is always a good idea to set goals and try to reach them. Had we never set a goal to get a man on the moon we never would have footage of Neil Armstrong stepping on the moon and saying thDepartment_of_Defense[1]e famous words, “One small step for a man, one giant leap for mankind.”

Lobby Day was also important to get bipartisan agreement and congressional representatives to sign “The Accelerating the End of Breast Cancer Act”, H.R. 1830, and that we continued to get the funding support for the Peer-Reviewed Department of Defense Breast Cancer Research Program (BCRP).

I also met some amazing new fearless friends many who currently are metastatic and have such interesting stories. As we all know it is our unique stories that move us to understand more about this horrible disease and fuels us to do whatever we can to help one another in this land of cancer.

I am so glad I went to DC and came back with all of this hope as well as meeting great new friends. The Summit was so much at once and my only criticism is that they packed in so much that we didn’t even have a break during meals because there were speeches and meetings during the whole time. Even though it was exhausting, the Summit was really worth it. Hope is a great thing to have in our lives.

Read all About It – Our Feel Good War on Breast Cancer

I scooped the article, Our Feel Good War on Breast Cancer in my “Breast Cancer Advocacy” news articles at the end of last week and it also came out in the New York Times weekend edition. There was a wonderful response to this article by Katherine O’Brien, who is the MBCN (Metastatic Breast Cancer Network) Secretary called Our Feel-Good War on Breast Cancer: MBCN Responds.

I have another post that refers to some points in these articles, so I want to first have them on my blog. Although the original article is long, for those of you who haven’t heard about or had a chance to read the article, it explains so much of what I (and lots of other patient advocates) have written about when referring to “pinking responsibly” and telling the truth about breast cancer, pink culture, and the reason we haven’t come very far when it comes to metastatic breast cancer.

Katherine O’Brien’s response is not as long and picks out the major points of the article so well that I am going to publish it first. I will finish cleaning up my next post that refers to this article as well as other things happening that are very disconcerting to me. You can either follow the link to: Our Feel-Good War on Breast Cancer: MBCN Responds and/or the link to Our Feel Good War on Breast Cancer here or read below.

Our Feel-Good War on Breast Cancer: MBCN Responds

Tony Cenicola/The New York Times; Gabrielle Plucknette/The New York Times (umbrella, socks, oven mitt); A.J. Mast/Associated Press; Nam Y. Huh/Associated Press; Kyle Kurlick/The Commercial Appeal, via Associated Press; Dr. Scott M. Lieberman/Associated Press

By Katherine O’Brien, MBCN Secretary

Editor’s Note: Peggy Orenstein’s April 25, 2013 article–the cover story for this Sunday’ s New York Times’ Magazine, demonstrates a remarkable depth and thoughtfulness. It is long–but well-worth the effort to read. For those looking for a quick overview, we’ve prepared the following summary and added our observations where appropriate. We hope it will aid readers’ understanding of this important article as well as prompt further discussions. Please share your insights in the comment section below.

Initial Treatment and Recurrence | Journalist Peggy Orenstein wrote “Our Feel-Good War on Breast Cancer,”   subtitled “The battle for awareness has been won. So why aren’t more lives being saved?” Orenstein frames the article within her own breast cancer experience.  Sixteen years ago at 35, Orenstein had a screening mammogram that revealed early stage breast cancer. Her treatment, at that time, was a lumpectomy, as well as six weeks of radiation.

In 2012, at age 52, Orenstein had a nonmetastatic recurrence. She found the lump herself, nine months after her annual mammogram. Because of her prior treatment, Orenstein’s doctor recommended a unilateral mastectomy as well as Tamoxifen.

Early Detection Doubts | In 1996, at the time of her first diagnosis,  Orenstein credited her screening mammogram with saving her life. (“I considered myself a loud-and-proud example of the benefits of early detection,” she writes.) In 2013, following  the cancer’s recurrence, she has changed her mind.

Orenstein  details the US screening mammogram debate. The popular perception,  fueled in part by some nonprofits and pink-ribbon themed efforts,  is that screening mammograms save lives. Evidence of actual mortality reduction is, in fact, conflicting and continues to be questioned by scientists, policy makers and members of the public. According to Orenstein:

“Mammograms, it turns out, are not so great at detecting the most lethal forms of disease — like triple negative — at a treatable phase. Aggressive tumors progress too quickly, often cropping up between mammograms. Even catching them “early,” while they are still small, can be too late: they have already metastasized. That may explain why there has been no decrease in the incidence of metastatic cancer since the introduction of screening.”

We Say: This article can be summed up in one sentence: “Early Detection is Not a Cure.” Metastatic breast cancer can occur 5, 10,  15 or even 20 years after a person’s original diagnosis and successful treatment checkups and annual mammograms.

Overtreatment | Orenstein explains that  breast cancer isn’t a single disease. But early mammography trials were conducted before variations in cancer were recognized: “before Herceptin, before hormonal therapy, even before the widespread use of chemotherapy.” She then raises the question of overtreatment. Dartmouth’s Gilbert Welch  co-authored a study that estimates that only 3 to 13 percent of women whose cancer was detected by mammograms actually benefited from the test.

We Say: We agree with author and patient advocate Musa Mayer who says: “If we had spent a fraction of the dollars devoted to promoting screening on research to determine which DCIS lesions and tiny invasive breast cancers actually need treatment beyond surgery, and which do not, we’d be way ahead now.” Without knowing which tumors will metastasize, we must treat all of them alike. Worse, “good” mammograms may give some women a false sense of security.

DCIS Dilemma | The article says mammograms and improved imaging technology have resulted in a dramatic increase in the number of people diagnosed with ductal carcinoma in situ (D.C.I.S.),  in which abnormal cells are found in the lining of the milk-producing ducts. DCIS and the less common lobular carcinoma in situ account for about a quarter of new breast-cancer cases — some 60,000 a year. “D.C.I.S. survivors are celebrated at pink-ribbon events as triumphs of early detection,” writes Orenstein. “Theirs was an easily treatable disease with a nearly 100 percent 10-year survival rate.”

We Say: One of our few quibbles with this article is its depiction of DCIS. We agree that most DCIS is successfully treated. But  the article cites an expert who says DCIS is “not cancer but a risk factor.”  This statement creates the overall impression is that DCIS is not a big deal. Again, in most cases DCIS does NOT go on to become invasive breast cancer, but unfortunately it can and does.

Confusing Statistics |  Orenstein say that the Komen organization, a mammogram/early detection proponent,  has been accused of citing deceptive five-year survival rates. Since these allegations first surfaced, Komen has stopped using the statistic in question.

We Say: NBCC does an excellent job of addressing this common misperception:

Mortality numbers tell the story more precisely than survival numbers. Screening skews the survival numbers:  The more we screen, the more we diagnose and treat women with breast cancers that would not have been a threat to their lives,  so it looks like survival for early stage breast cancer is 98 percent.

This is only a 5-year survival number—and includes the 20-30 percent of women who will have recurrence and may die of the disease later. . . Women die of metastatic disease, not primary breast cancer.

Incidence has risen during the past 20 years from 1 in 11 to 1 in 8, it’s now leveling off; mortality has declined slightly but a key point is incidence of stage IV breast cancer—the cancer that is lethal—has stayed the same; screening and improved treatment has not changed this.
Source: http://www.breastcancerdeadline2020.org/get-involved/tools-and-resources/toolkit/resources-and-tools-for-advocates

We Can’t Manage What We Don’t Measure: When will we start collecting meaningful statistics on metastatic breast cancer recurrence?  US cancer registry data captures data at the time of diagnosis and death. The registries don’t track what happens in between.

As Orenstein notes, 30% of those originally diagnosed with early stage breast cancer will have a metastatic recurrence. But this information is not tracked–until people die:

  • NCI and SEER database record  incidence, initial treatment and mortality data. Most people do NOT present with metastatic diagnosis. The cancer registry does not track recurrence—which is how the majority of people are thrust into the metastatic breast cancer ranks.
  • We say that there are 150,000 US people currently living with metastatic breast cancer, but that’s basically a guess.
  • We know for sure that 40,000 US people die from breast cancer every year. We know that 5 to10 percent of those with metastatic breast cancer were Stage IV from their first diagnosis. So what about the 90 to 95% of those 150,000 currently living with metastatic breast cancer  who were previously treated for early stage breast cancer? The cancer registry does not track them—until they die.

Funding Research | We need more metastatic breast cancer research. Orenstein confirms what MBCN and METAvivor have said for years. Metastatic breast cancer research is appallingly underfunded:

According to a Fortune magazine analysis, only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis; out of more than $2.2 billion dollars raised over the last six years, Komen has dedicated $79 million to such research — a lot of money, to be sure, but a mere 3.6 percent of its total budget during that period.

There’s also the intertwined issue of funding research for the prevention of metastatic breast cancer vs. treatments that will extend the lives of those currently living with the disease:

“A lot of people are under the notion that metastatic work is a waste of time,” said Danny Welch, chairman of the department of cancer biology at the University of Kansas Cancer Center, “because all we have to do is prevent cancer in the first place. The problem is, we still don’t even know what causes cancer. I’d prefer to prevent it completely too, but to put it crassly, that’s throwing a bunch of people under the bus right now.”

We Say: MBCN’s slogan is “Fighting for Treatments to Extend Life.” So we appreciate Welch’s candor and dedication.  And, if we want to prevent metastasis, we may need to rethink our current approach to clinical trials.  During last year’s annual Metastatic Breast Cancer Conference, NIH’s Dr. Patricia  Steeg made a case for redesigning clinical trials to do what she termed “phase II randomized metastasis-prevention trials.” Currently, phase I and phase II clinical trials are done in patients with advanced, refractory metastatic cancer, patients who have had many therapies. In phase II trials, researchers typically are trying to determine if a drug shrinks metastases.“But a drug that prevents metastasis may not shrink a large, refractory tumor,” said Steeg. “It has a different mechanism of action that is not picked up by the clinical trial system.”

Know The  Breast Cancer Facts | In her final paragraphs, Orenstein says we may have more breast cancer “awareness” but this “awareness” is fundamentally flawed: “All that well-meaning awareness has ultimately made women less conscious of the facts: obscuring the limits of screening, conflating risk with disease, compromising our decisions about health care, celebrating “cancer survivors” who may have never required treating. And ultimately, it has come at the expense of those whose lives are most at risk.”

We Say: Nicely done, Peggy. We’d be honored if you would join us at our 2013 Annual Metastatic Breast Cancer Conference, Sept. 21 at MD Anderson in Houston!

NMBCAD logo black smallMark Your Calendar: Peggy Orenstein’s article will go a long way in helping people understand breast cancer. As women living with metastatic breast cancer, we are committed to educating people about this disease. This article is a good start, but our reality remains poorly understood. That is why MBCN fought to establish  Oct. 13 as National Metastatic Breast Cancer Awareness Day. 

Let’s Keep Talking: On her Facebook post announcing the publication of this article, Orenstein said she hopes it will change the national conversation about breast cancer. We hope so, too. Peggy started the dialogue. Won’t you help us continue it?

4/29/2013 Editor’s Note: This copy has been revised to remove a disputed statistic concerning Stage II and Stage III metastatic recurrence, material that was directly quoted, as indicated,  from http://www.breastcancerdeadline2020.org/get-involved/tools-and-resources/toolkit/resources-and-tools-for-advocates. We will provide additional clarification if available.

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Our Feel-Good War on Breast Cancer

Tony Cenicola/The New York Times; Gabrielle Plucknette/The New York Times (umbrella, socks, oven mitt); A.J. Mast/Associated Press;
Nam Y. Huh/Associated Press; Kyle Kurlick/The Commercial Appeal, via Associated Press; Dr. Scott M. Lieberman/Associated Press.
By PEGGY ORENSTEIN
Published: April 25, 2013

So when the radiologist found an odd, bicycle-spoke-like pattern on the film — not even a lump — and sent me for a biopsy, I wasn’t worried. After all, who got breast cancer at 35?

It turns out I did. Recalling the fear, confusion, anger and grief of that time is still painful. My only solace was that the system worked precisely as it should: the mammogram caught my tumor early, and I was treated with a lumpectomy and six weeks of radiation; I was going to survive.

By coincidence, just a week after my diagnosis, a panel convened by the National Institutes of Health made headlines when it declined to recommend universal screening for women in their 40s; evidence simply didn’t show it significantly decreased breast-cancer deaths in that age group. What’s more, because of their denser breast tissue, younger women were subject to disproportionate false positives — leading to unnecessary biopsies and worry — as well as false negatives, in which cancer was missed entirely.

Those conclusions hit me like a sucker punch. “I am the person whose life is officially not worth saving,” I wrote angrily. When the American Cancer Society as well as the newer Susan G. Komen foundation rejected the panel’s findings, saying mammography was still the best tool to decrease breast-cancer mortality, friends across the country called to congratulate me as if I’d scored a personal victory. I considered myself a loud-and-proud example of the benefits of early detection.

Sixteen years later, my thinking has changed. As study after study revealed the limits of screening — and the dangers of overtreatment — a thought niggled at my consciousness. How much had my mammogram really mattered? Would the outcome have been the same had I bumped into the cancer on my own years later? It’s hard to argue with a good result. After all, I am alive and grateful to be here. But I’ve watched friends whose breast cancers were detected “early” die anyway. I’ve sweated out what blessedly turned out to be false alarms with many others.

Recently, a survey of three decades of screening published in November in The New England Journal of Medicine found that mammography’s impact is decidedly mixed: it does reduce, by a small percentage, the number of women who are told they have late-stage cancer, but it is far more likely to result in overdiagnosis and unnecessary treatment, including surgery, weeks of radiation and potentially toxic drugs. And yet, mammography remains an unquestioned pillar of the pink-ribbon awareness movement. Just about everywhere I go — the supermarket, the dry cleaner, the gym, the gas pump, the movie theater, the airport, the florist, the bank, the mall — I see posters proclaiming that “early detection is the best protection” and “mammograms save lives.” But how many lives, exactly, are being “saved,” under what circumstances and at what cost? Raising the public profile of breast cancer, a disease once spoken of only in whispers, was at one time critically important, as was emphasizing the benefits of screening. But there are unintended consequences to ever-greater “awareness” — and they, too, affect women’s health.

Breast cancer in your breast doesn’t kill you; the disease becomes deadly when it metastasizes, spreading to other organs or the bones. Early detection is based on the theory, dating back to the late 19th century, that the disease progresses consistently, beginning with a single rogue cell, growing sequentially and at some invariable point making a lethal leap. Curing it, then, was assumed to be a matter of finding and cutting out a tumor before that metastasis happens.

The thing is, there was no evidence that the size of a tumor necessarily predicted whether it had spread. According to Robert Aronowitz, a professor of history and sociology of science at the University of Pennsylvania and the author of “Unnatural History: Breast Cancer and American Society,” physicians endorsed the idea anyway, partly out of wishful thinking, desperate to “do something” to stop a scourge against which they felt helpless. So in 1913, a group of them banded together, forming an organization (which eventually became the American Cancer Society) and alerting women, in a precursor of today’s mammography campaigns, that surviving cancer was within their power. By the late 1930s, they had mobilized a successful “Women’s Field Army” of more than 100,000 volunteers, dressed in khaki, who went door to door raising money for “the cause” and educating neighbors to seek immediate medical attention for “suspicious symptoms,” like lumps or irregular bleeding.

The campaign worked — sort of. More people did subsequently go to their doctors. More cancers were detected, more operations were performed and more patients survived their initial treatments. But the rates of women dying of breast cancer hardly budged. All those increased diagnoses were not translating into “saved lives.” That should have been a sign that some aspect of the early-detection theory was amiss. Instead, surgeons believed they just needed to find the disease even sooner.

Mammography promised to do just that. The first trials, begun in 1963, found that screening healthy women along with giving them clinical exams reduced breast-cancer death rates by about 25 percent. Although the decrease was almost entirely among women in their 50s, it seemed only logical that, eventually, screening younger (that is, finding cancer earlier) would yield even more impressive results. Cancer might even be cured.

That hopeful scenario could be realized, though, if women underwent annual mammography, and by the early 1980s, it is estimated that fewer than 20 percent of those eligible did. Nancy Brinker founded the Komen foundation in 1982 to boost those numbers, convinced that early detection and awareness of breast cancer could have saved her sister, Susan, who died of the disease at 36. Three years later, National Breast Cancer Awareness Month was born. The khaki-clad “soldiers” of the 1930s were soon displaced by millions of pink-garbed racers “for the cure” as well as legions of pink consumer products: pink buckets of chicken, pink yogurt lids, pink vacuum cleaners, pink dog leashes. Yet the message was essentially the same: breast cancer was a fearsome fate, but the good news was that through vigilance and early detection, surviving was within their control.

By the turn of the new century, the pink ribbon was inescapable, and about 70 percent of women over 40 were undergoing screening. The annual mammogram had become a near-sacred rite, so precious that in 2009, when another federally financed independent task force reiterated that for most women, screening should be started at age 50 and conducted every two years, the reaction was not relief but fury. After years of bombardment by early-detection campaigns (consider: “If you haven’t had a mammogram, you need more than your breasts examined”), women, surveys showed, seemed to think screening didn’t just find breast cancer but actually prevented it.

At the time, the debate in Congress over health care reform was at its peak. Rather than engaging in discussion about how to maximize the benefits of screening while minimizing its harms, Republicans seized on the panel’s recommendations as an attempt at health care rationing. The Obama administration was accused of indifference to the lives of America’s mothers, daughters, sisters and wives. Secretary Kathleen Sebelius of the Department of Health and Human Services immediately backpedaled, issuing a statement that the administration’s policies on screening “remain unchanged.”

PR Newswire, via Associated Press; Tom DiPace/Associated Press; Gabrielle Plucknette/The New York Times (apron, sunglasses, flip-flop); Simon Fergusson/Getty Images.

Even as American women embraced mammography, researchers’ understanding of breast cancer — including the role of early detection — was shifting. The disease, it has become clear, does not always behave in a uniform way. It’s not even one disease. There are at least four genetically distinct breast cancers. They may have different causes and definitely respond differently to treatment. Two related subtypes, luminal A and luminal B, involve tumors that feed on estrogen; they may respond to a five-year course of pills like tamoxifen or aromatase inhibitors, which block cells’ access to that hormone or reduce its levels. In addition, a third type of cancer, called HER2-positive, produces too much of a protein called human epidermal growth factor receptor 2; it may be treatable with a targeted immunotherapy called Herceptin. The final type, basal-like cancer (often called “triple negative” because its growth is not fueled by the most common biomarkers for breast cancer — estrogen, progesterone and HER2), is the most aggressive, accounting for up to 20 percent of breast cancers. More prevalent among young and African-American women, it is genetically closer to ovarian cancer. Within those classifications, there are, doubtless, further distinctions, subtypes that may someday yield a wider variety of drugs that can isolate specific tumor characteristics, allowing for more effective treatment. But that is still years away.

Those early mammography trials were conducted before variations in cancer were recognized — before Herceptin, before hormonal therapy, even before the widespread use of chemotherapy. Improved treatment has offset some of the advantage of screening, though how much remains contentious. There has been about a 25 percent drop in breast-cancer death rates since 1990, and some researchers argue that treatment — not mammograms — may be chiefly responsible for that decline. They point to a study of three pairs of European countries with similar health care services and levels of risk: In each pair, mammograms were introduced in one country 10 to 15 years earlier than in the other. Yet the mortality data are virtually identical. Mammography didn’t seem to affect outcomes. In the United States, some researchers credit screening with a death-rate reduction of 15 percent — which holds steady even when screening is reduced to every other year. Gilbert Welch, a professor of medicine at the Dartmouth Institute for Health Policy and Clinical Practice and co-author of last November’s New England Journal of Medicine study of screening-induced overtreatment, estimates that only 3 to 13 percent of women whose cancer was detected by mammograms actually benefited from the test.

If Welch is right, the test helps between 4,000 and 18,000 women annually. Not an insignificant number, particularly if one of them is you, yet perhaps less than expected given the 138,000 whose cancer has been diagnosed each year through screening. Why didn’t early detection work for more of them? Mammograms, it turns out, are not so great at detecting the most lethal forms of disease — like triple negative — at a treatable phase. Aggressive tumors progress too quickly, often cropping up between mammograms. Even catching them “early,” while they are still small, can be too late: they have already metastasized. That may explain why there has been no decrease in the incidence of metastatic cancer since the introduction of screening.

At the other end of the spectrum, mammography readily finds tumors that could be equally treatable if found later by a woman or her doctor; it also finds those that are so slow-moving they might never metastasize. As improbable as it sounds, studies have suggested that about a quarter of screening-detected cancers might have gone away on their own. For an individual woman in her 50s, then, annual mammograms may catch breast cancer, but they reduce the risk of dying of the disease over the next 10 years by only .07 percentage points — from .53 percent to .46 percent. Reductions for women in their 40s are even smaller, from .35 percent to .3 percent.

If screening’s benefits have been overstated, its potential harms are little discussed. According to a survey of randomized clinical trials involving 600,000 women around the world, for every 2,000 women screened annually over 10 years, one life is prolonged but 10 healthy women are given diagnoses of breast cancer and unnecessarily treated, often with therapies that themselves have life-threatening side effects. (Tamoxifen, for instance, carries small risks of stroke, blood clots and uterine cancer; radiation and chemotherapy weaken the heart; surgery, of course, has its hazards.)

Many of those women are told they have something called ductal carcinoma in situ (D.C.I.S.), or “Stage Zero” cancer, in which abnormal cells are found in the lining of the milk-producing ducts. Before universal screening, D.C.I.S. was rare. Now D.C.I.S. and the less common lobular carcinoma in situ account for about a quarter of new breast-cancer cases — some 60,000 a year. In situ cancers are more prevalent among women in their 40s. By 2020, according to the National Institutes of Health’s estimate, more than one million American women will be living with a D.C.I.S. diagnosis.

D.C.I.S. survivors are celebrated at pink-ribbon events as triumphs of early detection: theirs was an easily treatable disease with a nearly 100 percent 10-year survival rate. The thing is, in most cases (estimates vary widely between 50 and 80 percent) D.C.I.S. will stay right where it is — “in situ” means “in place.” Unless it develops into invasive cancer, D.C.I.S. lacks the capacity to spread beyond the breast, so it will not become lethal. Autopsies have shown that as many as 14 percent of women who died of something other than breast cancer unknowingly had D.C.I.S.

There is as yet no sure way to tell which D.C.I.S. will turn into invasive cancer, so every instance is treated as if it is potentially life-threatening. That needs to change, according to Laura Esserman, director of the Carol Franc Buck Breast Care Center at the University of California, San Francisco. Esserman is campaigning to rename D.C.I.S. by removing its big “C” in an attempt to put it in perspective and tamp down women’s fear. “D.C.I.S. is not cancer,” she explained. “It’s a risk factor. For many D.C.I.S. lesions, there is only a 5 percent chance of invasive cancer developing over 10 years. That’s like the average risk of a 62-year-old. We don’t do heart surgery when someone comes in with high cholesterol. What are we doing to these people?” In Britain, where women are screened every three years beginning at 50, the government recently decided to revise its brochure on mammography to include a more thorough discussion of overdiagnosis, something it previously dispatched with in one sentence. That may or may not change anyone’s mind about screening, but at least there is a fuller explanation of the trade-offs.

In this country, the huge jump in D.C.I.S. diagnoses potentially transforms some 50,000 healthy people a year into “cancer survivors ” and contributes to the larger sense that breast cancer is “everywhere,” happening to “everyone.” That, in turn, stokes women’s anxiety about their personal vulnerability, increasing demand for screening — which, inevitably, results in even more diagnoses of D.C.I.S. Meanwhile, D.C.I.S. patients themselves are subject to the pain, mutilation, side effects and psychological trauma of anyone with cancer and may never think of themselves as fully healthy again.

Yet who among them would dare do things differently? Which of them would have skipped that fateful mammogram? As Robert Aronowitz, the medical historian, told me: “When you’ve oversold both the fear of cancer and the effectiveness of our prevention and treatment, even people harmed by the system will uphold it, saying, ‘It’s the only ritual we have, the only thing we can do to prevent ourselves from getting cancer.’ ”

What if I had skipped my first mammogram and found my tumor a few years later in the shower? It’s possible that by then I would have needed chemotherapy, an experience I’m profoundly thankful to have missed. Would waiting have affected my survival? Probably not, but I’ll never know for sure; no woman truly can. Either way, the odds were in my favor: my good fortune was not just that my cancer was caught early but also that it appeared to have been treatable.

Note that word “appeared”: one of breast cancer’s nastier traits is that even the lowest-grade caught-it-early variety can recur years — decades — after treatment. And mine did.

Patrick Hamilton/Newspix/Getty Images; Matt Born/The Star-News, via Associated Press; Gabrielle Plucknette/The New York Times; Sharpie, via Associated Press; U.S. Postal Service, via Associated Press.

Last summer, nine months after my most recent mammogram, while I was getting ready for bed and chatting with my husband, my fingers grazed something small and firm beneath the scar on my left breast. Just like that, I passed again through the invisible membrane that separates the healthy from the ill.

This latest tumor was as tiny and as pokey as before, unlikely to have spread. Obviously, though, it had to go. Since a lumpectomy requires radiation, and you can’t irradiate the same body part twice, my only option this round was a mastectomy. I was also prescribed tamoxifen to cut my risk of metastatic disease from 20 percent to 12. Again, that means I should survive, but there are no guarantees; I won’t know for sure whether I am cured until I die of something else — hopefully many decades from now, in my sleep, holding my husband’s hand, after a nice dinner with the grandchildren.

My first instinct this round was to have my other breast removed as well — I never wanted to go through this again. My oncologist argued against it. The tamoxifen would lower my risk of future disease to that of an average woman, he said. Would an average woman cut off her breasts? I could have preventive surgery if I wanted to, he added, but it would be a psychological decision, not a medical one.

I weighed the options as my hospital date approached. Average risk, after all, is not zero. Could I live with that? Part of me still wanted to extinguish all threat. I have a 9-year-old daughter; I would do anything — I need to do everything — to keep from dying. Yet, if death was the issue, the greatest danger wasn’t my other breast. It is that, despite treatment and a good prognosis, the cancer I’ve already had has metastasized. Preventive mastectomy wouldn’t change that; nor would it entirely eliminate the possibility of new disease, because there’s always some tissue left behind.

What did doing “everything” mean, anyway? There are days when I skip sunscreen. I don’t exercise as much as I should. I haven’t given up aged Gouda despite my latest cholesterol count; I don’t get enough calcium. And, oh, yeah, my house is six blocks from a fault line. Is living with a certain amount of breast-cancer risk really so different? I decided to take my doctor’s advice, to do only what had to be done.

I assumed my dilemma was unusual, specific to the anxiety of having been too often on the wrong side of statistics. But it turned out that thousands of women now consider double mastectomies after low-grade cancer diagnoses. According to Todd Tuttle, chief of the division of surgical oncology at the University of Minnesota and lead author of a study on prophylactic mastectomy published in The Journal of Clinical Oncology, there was a 188 percent jump between 1998 and 2005 among women given new diagnoses of D.C.I.S. in one breast — a risk factor for cancer — who opted to have both breasts removed just in case. Among women with early-stage invasive disease (like mine), the rates rose about 150 percent. Most of those women did not have a genetic predisposition to cancer. Tuttle speculated they were basing their decisions not on medical advice but on an exaggerated sense of their risk of getting a new cancer in the other breast. Women, according to another study, believed that risk to be more than 30 percent over 10 years when it was actually closer to 5 percent.

It wasn’t so long ago that women fought to keep their breasts after a cancer diagnosis, lobbying surgeons to forgo radical mastectomies for equally effective lumpectomies with radiation. Why had that flipped? I pondered the question as I browsed through the “Stories of Hope” on the American Cancer Society’s Web site. I came across an appealing woman in a pink T-shirt, smiling as she held out a white-frosted cupcake bedecked with a pink candle. In a first-person narrative, she said that she began screening in her mid-30s because she had fibrocystic breast disease. At 41, she was given a diagnosis of D.C.I.S., which was treated with lumpectomy and radiation. “I felt lucky to have caught it early,” she said, though she added that she was emotionally devastated by the experience. She continued screenings and went on to have multiple operations to remove benign cysts. By the time she learned she had breast cancer again, she was looking at a fifth operation on her breasts. So she opted to have both of them removed, a decision she said she believed to be both logical and proactive.

I found myself thinking of an alternative way to describe what happened. Fibrocystic breast disease does not predict cancer, though distinguishing between benign and malignant tumors can be difficult, increasing the potential for unnecessary biopsies. Starting screening in her 30s exposed this woman to years of excess medical radiation — one of the few known causes of breast cancer. Her D.C.I.S., a condition detected almost exclusively through mammography, quite likely never would become life-threatening, yet it transformed her into a cancer survivor, subjecting her to surgery and weeks of even more radiation. By the time of her second diagnosis, she was so distraught that she amputated both of her breasts to restore a sense of control.

Should this woman be hailed as a survivor or held up as a cautionary tale? Was she empowered by awareness or victimized by it? The fear of cancer is legitimate: how we manage that fear, I realized — our responses to it, our emotions around it — can be manipulated, packaged, marketed and sold, sometimes by the very forces that claim to support us. That can color everything from our perceptions of screening to our understanding of personal risk to our choices in treatment. “You could attribute the rise in mastectomies to a better understanding of genetics or better reconstruction techniques,” Tuttle said, “but those are available in Europe, and you don’t see that mastectomy craze there. There is so much ‘awareness’ about breast cancer in the U.S. I’ve called it breast-cancer overawareness. It’s everywhere. There are pink garbage trucks. Women are petrified.”

“Nearly 40,000 women and 400 men die every year of breast cancer,” Lynn Erdman, vice president of community health at Komen, told me. “Until that number dissipates, we don’t think there’s enough pink.”

I was sitting in a conference room at the headquarters of Susan G. Komen, near the Galleria mall in Dallas. Komen is not the country’s largest cancer charity — that would be the American Cancer Society. It is, however, the largest breast-cancer organization. And although Komen’s image was tarnished last year by its attempt to defund a Planned Parenthood screening program, its name remains virtually synonymous with breast-cancer advocacy. With its dozens of races “for the cure” and some 200 corporate partnerships, it may be the most successful charity ever at branding a disease; its relentless marketing has made the pink ribbon one of the most recognized logos of our time. The ribbon has come to symbolize both fear of the disease and the hope it can be defeated. It’s a badge of courage for the afflicted, an expression of solidarity by the concerned. It promises continual progress toward a cure through donations, races, volunteerism. It indicates community. And it offers corporations a seemingly fail-safe way to signal good will toward women, even if, in a practice critics call “pinkwashing,” the products they produce are linked to the disease or other threats to public health. Having football teams don rose-colored cleats, for instance, can counteract bad press over how the N.F.L. handles accusations against players of rape or domestic violence. Chevron’s donations to California Komen affiliates may help deflect what Cal OSHA called its “willful violations” of safety that led to a huge refinery fire last year in a Bay Area neighborhood.

More than anything else, though, the ribbon reminds women that every single one of us is vulnerable to breast cancer, and our best protection is annual screening. Despite the fact that Komen trademarked the phrase “for the cure,” only 16 percent of the $472 million raised in 2011, the most recent year for which financial reports are available, went toward research. At $75 million, that’s still enough to give credence to the claim that Komen has been involved in every major breast-cancer breakthrough for the past 29 years. Still, the sum is dwarfed by the $231 million the foundation spent on education and screening.

Though Komen now acknowledges the debate over screening on its Web site, the foundation has been repeatedly accused of overstating mammography’s benefits while dismissing its risks. Steve Woloshin, a colleague of Welch’s at Dartmouth and co-author of the Not So Stories column in The British Medical Journal, points to a recent Komen print ad that reads: “The five-year survival rate for breast cancer when caught early is 98 percent. When it’s not? It decreases to 23 percent.” Woloshin called that willfully deceptive. The numbers are accurate, but five-year survival rates are a misleading measure of success, skewed by screening itself. Mammography finds many cancers that never need treating and that are, by definition, survivable. Meanwhile, some women with lethal disease may seem to live longer because their cancer was found earlier, but in truth, it’s only their awareness of themselves as ill that has been extended. “Imagine a group of 100 women who received diagnoses of breast cancer because they felt a breast lump at age 67, all of whom die at age 70,” Woloshin said. “Five-year survival for this group is 0 percent. Now imagine the same women were screened, given their diagnosis three years earlier, at age 64, but treatment doesn’t work and they still die at age 70. Five-year survival is now 100 percent, even though no one lived a second longer.”

When I asked Chandini Portteus, vice president of research, evaluation and scientific programs at Komen, in January why the foundation continued to use that statistic, she didn’t so much explain as sidestep. “I don’t think Komen meant to mislead,” she said. “We know that mammography certainly isn’t perfect. We also know that it’s what we have and that it’s important in diagnosing breast cancer.” (The statistic was subsequently removed from its Web site.)

In “Pink Ribbon Blues,” Gayle Sulik, a sociologist and founder of the Breast Cancer Consortium, credits Komen (as well as the American Cancer Society and National Breast Cancer Awareness Month) with raising the profile of the disease, encouraging women to speak about their experience and transforming “victims” into “survivors.” Komen, she said, has also distributed more than $1 billion to research and support programs. At the same time, the function of pink-ribbon culture — and Komen in particular — has become less about eradication of breast cancer than self-perpetuation: maintaining the visibility of the disease and keeping the funds rolling in. “You have to look at the agenda for each program involved,” Sulik said. “If the goal is eradication of breast cancer, how close are we to that? Not very close at all. If the agenda is awareness, what is it making us aware of? That breast cancer exists? That it’s important? ‘Awareness’ has become narrowed until it just means ‘visibility.’ And that’s where the movement has failed. That’s where it’s lost its momentum to move further.”

Before the pink ribbon, awareness as an end in itself was not the default goal for health-related causes. Now you’d be hard-pressed to find a major illness without a logo, a wearable ornament and a roster of consumer-product tie-ins. Heart disease has its red dress, testicular cancer its yellow bracelet. During “Movember” — a portmanteau of “mustache” and “November” — men are urged to grow their facial hair to “spark conversation and raise awareness” of prostate cancer (another illness for which early detection has led to large-scale overtreatment) and testicular cancer. “These campaigns all have a similar superficiality in terms of the response they require from the public,” said Samantha King, associate professor of kinesiology and health at Queen’s University in Ontario and author of”Pink Ribbons, Inc.” “They’re divorced from any critique of health care policy or the politics of funding biomedical research. They reinforce a single-issue competitive model of fund-raising. And they whitewash illness: we’re made ‘aware’ of a disease yet totally removed from the challenging and often devastating realities of its sufferers.”

I recalled the dozens of news releases I received during last October’s National Breast Cancer Awareness Month, an occasion I observed in bed while recovering from my mastectomy. There was the one from Komen urging me to make a “curemitment” to ending breast cancer by sharing a “message about early detection or breast self-awareness that resonates with you”; the one about the town painting itself pink for “awareness”; the one from a Web site called Pornhub that would donate a penny to a breast-cancer charity for every 30 views of its “big-” or “small-breast” videos.

Then there are the groups going after the new hot “awareness” demographic: young women. “Barbells for Boobies” was sponsoring weight-lifting fund-raisers to pay for mammograms for women under 40. Keep A Breast (known for its sassy “I ♥ Boobies” bracelets) urges girls to perform monthly self-exams as soon as they begin menstruating. Though comparatively small, these charities raise millions of dollars a year — Keep A Breast alone raised $3.6 million in 2011. Such campaigns are often inspired by the same heartfelt impulse that motivated Nancy Brinker to start Komen: the belief that early detection could have saved a loved one, the desire to make meaning of a tragedy.

Yet there’s no reason for anyone — let alone young girls — to perform monthly self-exams. Many breast-cancer organizations stopped pushing it more than a decade ago, when a 12-year randomized study involving more than 266,000 Chinese women, published in The Journal of the National Cancer Institute, found no difference in the number of cancers discovered, the stage of disease or mortality rates between women who were given intensive instruction in monthly self-exams and women who were not, though the former group was subject to more biopsies. The upside was that women were pretty good at finding their own cancers either way.

Beyond misinformation and squandered millions, I wondered about the wisdom of educating girls to be aware of their breasts as precancerous organs. If decades of pink-ribboned early-detection campaigns have distorted the fears of middle-aged women, exaggerated their sense of personal risk, encouraged extreme responses to even low-level diagnoses, all without significantly changing outcomes, what will it mean to direct that message to a school-aged crowd?

Young women do get breast cancer — I was one of them. Even so, breast cancer among the young, especially the very young, is rare. The median age of diagnosis in this country is 61. The median age of death is 68. The chances of a 20-year-old woman getting breast cancer in the next 10 years is about .06 percent, roughly the same as for a man in his 70s. And no one is telling him to “check your boobies.”

“It’s tricky,” said Susan Love, a breast surgeon and president of the Dr. Susan Love Research Foundation. “Some young women get breast cancer, and you don’t want them to ignore it, but educating kids earlier — that bothers me. Here you are, especially in high school or junior high, just getting to know to your body. To do this search-and-destroy mission where your job is to find cancer that’s lurking even though the chance is minuscule to none. . . . It doesn’t serve anyone. And I don’t think it empowers girls. It scares them.”

Rather than offering blanket assurances that “mammograms save lives,” advocacy groups might try a more realistic campaign tag line. The researcher Gilbert Welch has suggested, “Mammography has both benefits and harms — that’s why it’s a personal decision.” That was also the message of the 2009 task force, which was derailed by politics: scientific evidence indicates that getting mammograms every other year if you are between the ages of 50 and 74 makes sense; if you fall outside that age group and still want to be screened, you should be fully informed of the downsides.

Gabrielle Plucknette/The New York Times; Adrian Keating/Associated Press

Women are now well aware of breast cancer. So what’s next? Eradicating the disease (or at least substantially reducing its incidence and devastation) may be less a matter of raising more money than allocating it more wisely. When I asked scientists and advocates how at least some of that awareness money could be spent differently, their answers were broad and varied. Many brought up the meager funding for work on prevention. In February, for instance, a Congressional panel made up of advocates, scientists and government officials called for increasing the share of resources spent studying environmental links to breast cancer. They defined the term liberally to include behaviors like alcohol consumption, exposure to chemicals, radiation and socioeconomic disparities.

Other researchers are excited about the prospect of fighting or preventing cancer by changing the “microenvironment” of the breast — the tissue surrounding a tumor that can stimulate or halt its growth. Susan Love likened it to the way living in a good or bad neighborhood might sway a potentially delinquent child. “It may well be,” she told me, “that by altering the ‘neighborhood,’ whether it’s the immune system or the local tissue, we can control or kill the cancer cells.” Taking hormone-replacement therapy during menopause, which was found to contribute to escalating rates of breast cancer, may have been the biological equivalent of letting meth dealers colonize a street corner. On the other hand, a vaccine, the current focus of some scientists and advocates, would be like putting more cops on the beat.

Nearly everyone agrees there is significant work to be done at both ends of the diagnostic spectrum: distinguishing which D.C.I.S. lesions will progress to invasive disease as well as figuring out the mechanisms of metastasis. According to a Fortune magazine analysis, only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis; out of more than $2.2 billion dollars raised over the last six years, Komen has dedicated $79 million to such research — a lot of money, to be sure, but a mere 3.6 percent of its total budget during that period.

“A lot of people are under the notion that metastatic work is a waste of time,” said Danny Welch, chairman of the department of cancer biology at the University of Kansas Cancer Center, “because all we have to do is prevent cancer in the first place. The problem is, we still don’t even know what causes cancer. I’d prefer to prevent it completely too, but to put it crassly, that’s throwing a bunch of people under the bus right now.”

One hundred and eight American women die of breast cancer each day. Some can live for a decade or more with metastatic disease, but the median life span is 26 months. One afternoon I talked to Ann Silberman, author of the blog “Breast Cancer? But Doctor . . . I Hate Pink.” Silberman started writing it in 2009, at age 51, after finding a lump in her breast that turned out to be cancer — a Stage 2 tumor, which she was told gave her a survival rate of 70 percent. At the time she was a secretary at a school in Sacramento, happily married and the mother of two boys, ages 12 and 22. Over the next two years, she had surgery, did six rounds of chemo, took a trio of drugs including Herceptin and, finally, thought she was done.

Four months later, a backache and bloated belly sent her to the doctor; the cancer had spread to her liver. Why didn’t the treatment work? No one knows. “At this point, you know that you’re going to die, and you know it’s going to be in the next five years,” she told me. Her goal is to see her youngest son graduate from high school next June.

It isn’t easy to face someone with metastatic disease, especially if you’ve had cancer yourself. Silberman’s trajectory is my worst fear; the night after we spoke, I was haunted by dreams of cancer’s return. Perhaps for that reason, metastatic patients are notably absent from pink-ribbon campaigns, rarely on the speaker’s podium at fund-raisers or races. Last October, for the first time, Komen featured a woman with Stage 4 disease in its awareness-month ads, but the wording carefully emphasized the positive: “Although, today, she has tumors in her bones, her liver and her lungs, Bridget still has hope.” (Bridget died earlier this month.)

“All that awareness terminology isn’t about us,” Silberman said. “It’s about surviving, and we’re not going to survive. We’re going to get sick. We’re going to lose parts of our livers. We’re going to be on oxygen. We’re going to die. It’s not pretty, and it’s not hopeful. People want to believe in ‘the cure,’ and they want to believe that cure is early detection. But you know what? It’s just not true.”

Scientific progress is erratic, unpredictable. “We are all foundering around in the dark,” said Peter B. Bach, director of the Center for Health Policy and Outcomes at Memorial Sloan-Kettering Cancer Center. “The one thing I can tell you is some of that foundering has borne fruit.” There are the few therapies, he said — like tamoxifen and Herceptin — that target specific tumor characteristics, and newer tests that estimate the chance of recurrence in estrogen-positive cancers, allowing lower-risk women to skip chemotherapy. “That’s not curing cancer,” Bach said, “but it’s progress. And yes, it’s slow.”

The idea that there could be one solution to breast cancer — screening, early detection, some universal cure — is certainly appealing. All of us — those who fear the disease, those who live with it, our friends and families, the corporations who swathe themselves in pink — wish it were true. Wearing a bracelet, sporting a ribbon, running a race or buying a pink blender expresses our hopes, and that feels good, even virtuous. But making a difference is more complicated than that.

It has been four decades since the former first lady Betty Ford went public with her breast-cancer diagnosis, shattering the stigma of the disease. It has been three decades since the founding of Komen. Two decades since the introduction of the pink ribbon. Yet all that well-meaning awareness has ultimately made women less conscious of the facts: obscuring the limits of screening, conflating risk with disease, compromising our decisions about health care, celebrating “cancer survivors” who may have never required treating. And ultimately, it has come at the expense of those whose lives are most at risk.

Peggy Orenstein is a contributing writer for the magazine and the author, most recently, of  “Cinderella Ate My Daughter: Dispatches From the Front Lines of the New Girlie-Girl Culture.”

Editor: Ilena Silverman

This article has been revised to reflect the following correction:

Correction: April 28, 2013

An article on Page 36 this weekend about breast cancer awareness misidentifies the reduction in the chance that a woman in her 50s will die of breast cancer over the next 10 years if she undergoes screening. It is .07 percentage points, not .07 percent.

Dr. Susan Love is Back in Action

Below is the statement from Dr. Susan Love about her returning after going through treatment for leukemia. I was very excited that on January 10th, because I am a volunteer, I joined Dr. Susan Love and the Community Engagement Team at the Dr. Susan Love Research Foundation for an interactive, informative webinar to learn more about the Foundation, its signature Army of Women Program, and mobilizing the community to help create a future without breast cancer!

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For me it was so exciting to hear her voice . I am so used to her being at so many breast cancer events and I missed her. I was also pleased that when I asked her “Although I am very excited about the deadline to end breast cancer in 2020, what is being done to help the metastatic community now?” She expressed that it was an important question and went in to some details about advances being made in the metastatic setting especially in relation to molecular profiling and understanding why it occurs. There is still so much work to do especially when it comes to metastatic breast cancer.

If you don’t know about Dr. Susan Love’s Foundation please click on the links below to learn more. You don’t have to have had breast cancer to join. In fact many of the studies are for women who have not had breast cancer, so please take a look and see if you can join to help!
LINKS FOR INFORMATION:
Dr. Susan Love’s statement about her return:

Back in Action

By On Wednesday, January 16, 2013 · 70 Comments

First of all I want to announce, fanfare please, that I am back to work at the Foundation!  I am feeling stronger every day with my new bone marrow and very short hair.  If I were to encapsulate in one word what my recent experience with leukemia has inspired, I would have to say impatience. I have talked for years about the collateral damage that patients experience from cancer treatments and now I know them first hand.  They are not acceptable!

While we all want a cure, we have to focus collectively on finding the cause!  I have come back to work with new energy focused on research strategies going forward that can have an immediate impact on women’s lives and move  us closer to finding the cause and true prevention! I told you I was impatient!  Stay tuned, as we will need all of you in the Army of Women and Health of Women Study (HOW) study to participate as we move forward!

Help_Button_4678245While out on leave, my team at the Foundation has been steadfast in their efforts to introduce our innovative research projects.  We launched our Bacterial and Viral Diversity Study in collaboration with Delphine Lee MD at the John Wayne Cancer Institute this November. This is a very exciting exploratory study to see if a virus or bacteria could cause breast cancer.  We have already begun out sample collections at the Foundation.  We are collecting fluid from the ducts of Army of Women volunteers and  characterizing all of the non-human DNA we can find.  Then, we will match it to known viruses and bacteria and see who is there!  This is the first step to determine whether breast cancer could be caused by a virus or bacteria.  I’m thrilled to be back doing research and to have this exciting project underway.  Updates to come!

Please Join the Dr Susan Love Research Foundation and the City of Hope in the How Study

What is the Health of Women (HOW) Study?

The majority of women who get breast cancer have none of the known clinical risk factors. This means we don’t know what causes breast cancer or how to prevent it. The HOW Study is a first-of-its-kind international online study for women and men with and without a history of breast cancer.  We will collect information about your health, your job, your diet, and your family history, among other topics that can help us get a better understanding of breast cancer and its potential causes.  Periodically, we will send you questionnaires about anything and everything. All you have to do is fill them out online. It’s that simple. This is a partnership and we need you for the long haul. The more questionnaires you fill out, the more information we will have that can help us have a better understanding of why women get breast cancer.

Who is HOW?

HOW is all about you and what you can do to end breast cancer. HOW is also about the researchers who can use this data to have a better understanding of ways we can prevent breast cancer. HOW is all of us, working together, to bring an end to this disease. The HOW Study is being conducted at the Dr. Susan Love Research Foundation, in collaboration with City of Hope Comprehensive Cancer Center.

Go to: https://www.healthofwomenstudy.org/Default.aspx