Life After Breast Cancer Treatment: The "New Normal"

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Life After Breast Cancer Treatment: The "New Normal" CME
Eric P. Winer, MD; Funda Meric-Bernstam, MD; Diana D. Rowden, MA, BA; Ann H. Partridge, MD, MPH


Related Downloads: Patient Handout
Eric P. Winer, MD: Hello, and welcome to this Medscape Oncology spotlight entitled, "Life After Breast Cancer Treatment, The New Normal." I am Eric Winer, MD, Chief Scientific Advisor to Susan G. Komen for the Cure. I am also the Director of the Breast Oncology Center at the Dana-Farber Cancer Institute in Boston and Chair of the Steering Committee that guides content supported by Susan G. Komen for the Cure on Medscape Oncology.

I would like to welcome my colleagues, Funda Meric-Bernstam, MD, Associate Professor in the Department of Surgical Oncology at The University of Texas MD Anderson Cancer Center in Houston; Diana D. Rowden, MA, BA, Vice President of Health Sciences at Susan G. Komen and herself a breast cancer survivor and patient advocate; and finally Ann H. Partridge, MD, MPH, Assistant Professor of Medicine at Harvard Medical School in Boston and Director of the Program for Young Women With Breast Cancer at Dana-Farber Cancer Institute. Welcome everyone, and thank you for joining us.
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The goal of this program is to help clinicians recognize the medical, emotional, and psychological concerns and needs of women who have been treated for breast cancer. We also hope that this panel discussion will help clinicians address patient needs, either directly or by referral to appropriate health and community resources.
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The issues surrounding cancer survivorship are the fortunate consequence of increasingly effective treatment and improved outcomes. In the United States, there are approximately 2.5 million women who are breast cancer survivors. For many decades, cancer specialists focused almost exclusively on eliminating life-threatening tumors -- the focus was always on achieving the cure. It is a testament to our collective successes that we are here today talking about life after breast cancer treatment.
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Adaptation to life after breast cancer treatment is as varied as our patients. Some women become anxious about the potential for disease recurrence, whereas many others choose to go on with their lives and never to think about breast cancer. This is highly variable, and when we interact with patients we need to think about how a woman has adapted to her breast cancer and what she as an individual needs in the follow-up visits with us.

Many women become quite vigilant after breast cancer, educating themselves and staying up to date with scientific advances in the field. Some become advocates, choosing to actively assist others during and after treatment for breast cancer; that, of course, is the minority of all of our patients. But we should recognize that there are many, many women who learn a great deal about breast cancer after they have had it and will come to their clinic visits armed with a great deal of knowledge.

Life after breast cancer may be worse or it may be better than it was before. We hope, of course, that most of the time it won't be worse, but for many women, it almost certainly is different. The search for what has been called the "new normal" is what we are talking about here today.

What is life like for a woman after breast cancer treatment?
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We are going to start by talking about that period of time immediately after breast cancer treatment has been completed. A woman has been diagnosed with breast cancer, and she has gone through that intensive period of time with all that the diagnosis entails: she has had all of the tests related to diagnosis, she has met with specialists, she has formed a treatment plan with her doctors, she has had surgery, she has perhaps had chemotherapy, she has had radiation, and that is now finished. She thinks she is going to feel fine now, that everything is going to be back to normal. Maybe even more importantly, everyone around her thinks that she is going to be exactly the way that she was, and sometimes that is not the case.

We can spend a little bit of time talking about that period of time. I am first going to ask Diana, who actually went through this some number of years ago, what that was like.

Diana D. Rowden, MA, BA: As you said, it is a very intense process, and then all of the sudden it is over. Often the emotional issues don't really start becoming apparent until after the actual treatment process is over. Sometimes, as was the case for me, it may actually be a few months before a woman really starts facing the emotional upheaval associated with the cancer diagnosis and treatment and is ready to ask: "Well, what's next?"

You are not seeing the doctor as often, you are not getting the attention that you have been, and unless you are taking tamoxifen or an aromatase inhibitor, you are not getting anything that makes you feel like something is being done about the cancer. I think that is the time when women seek out a support group.

Dr. Winer: Even if someone is taking hormonal therapy, she is going to have far fewer medical appointments than she did when receiving daily radiation or frequent chemotherapy infusions. People often describe those appointments as being a bit like a support group.

Funda, is this something you see? You often will see people for surgery, and then the first follow-up visit may actually coincide with the end of their medical treatment, is that right?

Funda Meric-Bernstam, MD: That's exactly right. We often ask the patients who undergo breast-conserving surgery to come back about 6 months after radiation therapy is complete. This is a great time surgically to evaluate people because we get to assess whether they are happy with their cosmetic results, and we get our first imaging to make sure that mammographically everything looks clear. This is a good time to make sure that everything medical is addressed and there are no new psychosocial issues.

Dr. Winer: Ann, how can we help doctors address the needs that women have in this situation?
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Ann H. Partridge, MD, MPH: The first thing to recognize among doctors, as well as the family members of the patients, is that it is a process. It takes time for women to get back to that "new normal," and everybody needs to be patient. Doctors need to elicit from the patient what is going on with them and what doesn't feel right still. We need to make it easier for patients to tell us their concerns, such as: "I still am having a hard time with this symptom and in addition I am anxious about recurrence or I am anxious that my hair is not back yet." We need to remember that just because the patient finished chemotherapy doesn't mean that mentally she is done with chemotherapy or treatment. I think it is really important that we pay attention and that doctors more and more address these issues. It is referred to in the literature as the "transition period," that time when people go from "active acute therapy" to "survivorship." It is a time when people can have crises emotionally because, just as Diana said, they are going from active treatment to more long-term surveillance and don't have the false reassurance of seeing healthcare providers on a regular basis. The more we are aware of that, the more we can help people to acknowledge it, to say "I am going to get through this."

Dr. Winer: I sometimes tell patients that while they have gone through cancer treatment, any other problems they had in their lives before were just put on hold. The other issue that comes up is that they realize that they still have those same problems to deal with: the child they may be upset with or the spouse that they may or may not be getting along with is still there. They have to readdress the fact that they hopefully have a very long life to live. It is a complicated time.

From a clinician's standpoint, this is a time when women may be calling the office a great deal, may be coming for frequent visits, and some of that may be arising from free-floating anxiety. How do you address that?

Ms. Rowden: I did that. If you have an ache or a pain, your first thought is that it is cancer.

Dr. Winer: And you think, "I have got to talk to the oncologist."

Ms. Rowden: You don't think that you did yard work and you hurt your back.

I think that healthcare professionals need to understand that anxiety and also that it sometimes actually is something [physical] that needs to be addressed. It might not be the cancer, but it might be something else, and so it might require a referral to a different kind of doctor if there is another health issue going on.
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Dr. Winer: Sometimes that anxiety also manifests itself in wanting to be followed very, very frequently, which brings us into a discussion about how best to follow women who have had breast cancer. This is a setting where there have been randomized trials,[1] and there are numerous guidelines.[2-4] I think we all spend time talking to patients about it, but maybe we can talk for a few minutes about what those guidelines say and, maybe even more importantly, how you explain the guidelines to patients.

First, why don't we focus on what is appropriate in terms of breast imaging after a diagnosis of breast cancer. This is now particularly complex because of all of the discussion surrounding magnetic resonance imaging (MRI). Funda?
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Dr. Meric-Bernstam: Let's leave the MRI issue aside for a minute. The current standard for patients who have undergone breast-conserving surgery is to undergo a mammogram as baseline approximately 6 months after radiation therapy is complete, followed by diagnostic mammograms for the first 5 years, and then switching back to screening mammograms.[2,3]

Clearly, patients who have breast cancer are at increased risk for a new breast cancer in that breast that is conserved [ie, ipsilateral], as well as a local recurrence. Many women come in desiring more frequent imaging, more intensive imaging such as with MRI, but really there are no data supporting that at this point in time. Mammography is the way to go unless there is something more unusual, such as patients who have a known genetic predisposition with BRCA1 and BRCA2 mutations, for example. That patient population, of course, is at higher risk overall, so that is a scenario in which we do use MRI, often alternating with mammograms every 6 months.

Dr. Winer: Is there any role for more frequent mammography in the absence of a problem or some abnormality that a radiologist has found?

Dr. Meric-Bernstam: No.
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Dr. Winer: Here's an example: Your patient has had a mammogram. The breast imager sends you the report, which says that "the breasts are heterogeneously dense and that an MRI may provide additional information." How do you respond to that? This is a problem that I am absolutely certain practitioners deal with on a frequent basis.

Dr. Meric-Bernstam: This is a very important area in which the physicians taking care of the patient clinically have to communicate with their radiologists. I think in certain scenarios (for example, initial imaging where surgical planning is coming into play), it may be reasonable to selectively use MRI.

But there are no data for using MRI for routine follow-up, and clearly still there is a high false-positive rate in MRI. I think the MRI is going to trigger more anxiety at the end. So, again, there are no data to support the use of MRI routinely in an average woman who has developed breast cancer.

Dr. Partridge: I think it is really important that we tell our patients that the likelihood of them developing a new primary tumor, for which something like the addition of MRI would add value, is very, very small. That kind of information can provide patients some reassurance: (1) there are no data that it is going to help you; and (2) the data that are available suggest that the likelihood of having a new problem is so small that it might not even be worth the risk of claustrophobia and the other things that people hate about MRI.

Dr. Winer: That is even more true in patients who are on ongoing endocrine therapy. We know that aromatase inhibitors, tamoxifen -- any of the available endocrine therapies -- dramatically decrease the risk for an ipsilateral recurrence or a contralateral breast cancer. Of course, one also has to consider the competing risk that the cancer that was treated will cause a problem. As I often describe it to the patient, this is really the "main event." The likelihood that an MRI is going to be very useful on a routine basis is really quite small. That said, it is always easier for a doctor to order a test than to have a conversation, because the conversations can be difficult. I think that we would all encourage our colleagues to have those conversations because if you don't have them up front, it can lead to a lot of confusion and even longer conversations later.

Dr. Meric-Bernstam: I think it is actually important to warn anybody who comes in requesting MRI of the pros and cons of doing an MRI before you order the MRI.

Dr. Partridge: There is a high false-positive rate, and once someone has had a false positive and gone through the trauma of thinking, "I might be going through this again," patients who have had MRIs don't want them anymore.

Dr. Winer: Let's talk about other testing. Ann, apart from breast imaging, what is appropriate after a diagnosis of breast cancer? This comes up with every patient who is completing therapy. They all want to know how they will be followed, often with the expectation that that follow-up is going to include CAT [computerized axial tomography] scans and bone scans and various blood tests.
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Dr. Partridge: As you do, I have this conversation with my patients every day. Fortunately, in breast cancer there are randomized clinical trial data where one group of patients who have undergone intense surveillance with imaging and blood work was compared with a group that had routine surveillance consisting of breast exams and elicitation of symptoms. Both groups had providers who were available if there were problems in between scheduled clinical trial visits. These data, which emanated from Italy about 10 years ago, suggest no improvement in survival and no improvement in quality of life from the intensive surveillance.[5]

In anecdotal studies, the rate of false positivity when you are looking elsewhere in the body is quite high, and that generates significant anxiety. I explain to my patients, "I could torture you with a scan if you really want it, but there is no evidence it is going to help in the long run."

What that means is that, unfortunately, if a person is going to develop recurrent breast cancer elsewhere in the body, it doesn't matter when that is found as long as the patient doesn't ignore significant symptoms. Once you start treatment, it either works or it doesn't work. That is what will ultimately determine survival, that and the biology of the disease, and, of course, those are intricately linked.

Dr. Winer: Unfortunately, making a diagnosis of recurrent breast cancer, metastatic breast cancer, a few months earlier as a result of a scan or an elevation in a blood test [result] does not lead to an improvement in either survival or quality of life as best we know. This [Spotlight] is being taped at ASCO 2009, and at this meeting, there will be data presented that the same is true in terms of ovarian cancer. Following women treated for stage III and IV ovarian cancer with curative intent with serial CA125s does not seem to lead to a prolongation in survival or quality of life either.[6] I think this is really now true in the case of both ovarian cancer and breast cancer: it is as if there is an opportunity to cure a patient up front -- to eradicate all disease, and if that is not successful, then finding it a little bit earlier just doesn't lead to any meaningful difference in overall survival.
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Dr. Partridge: It is important that we also tell our patients that the vast majority of symptoms that they develop in survivorship will not be directly related to a cancer recurrence, even though they remain at risk.

Patients should also know that for the vast majority of patients in clinical trials, when they developed recurrent disease, it was actually picked up during the interval in between scans, not by the scan. The scans provide false reassurance for those who are going to ultimately have a recurrence. For the patients who aren't going to have a recurrence, the false positives can cause anxiety.

Dr. Winer: This conversation often causes anxiety, and this conversation is a hard conversation. I think that it is one where we have to be really direct with people and at the same time listen to where they are coming from.

This is a conversation that is occurring right after or sometimes even during breast cancer treatment. Diana, from a patient perspective, how hard is all of this to hear?

Ms. Rowden: It is important to have the conversation at the front end, but then you have to repeat it because you don't absorb everything.

Dr. Partridge: Many times.

Ms. Rowden: There is just too much information.
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Women talk to other women, and when they hear that someone else's doctor did a certain test, they then come back and ask their doctor, "How come you are not doing this test?"

I think it is important to talk about the fact that not all breast cancers are alike. Patients need to understand that what might be appropriate with one case is not necessarily called for in another case.

I was diagnosed a long time ago, and everyone was getting bone scans, MUGA [multiple-gated acquisition] scans, and many other tests. You get anxious about it, and you are waiting for the results, but then when you get the news that everything is clear, it is a false reassurance that everything is okay.

I think it is important for the doctor to explain to the patient why these tests aren't really necessary and that when they are appropriate you would order them. I certainly know that I have had friends who have called up and ordered bone scans for themselves because they were anxious.

Dr. Winer: We are going to do a "lightning round" now, and I am going to go through several topics and ask each of you to comment. First let's talk about some postsurgical complications.

Lymphedema is less common than it was 20 years ago, but I think it is feared as much as it ever was. What do you tell patients? How common is this and, perhaps most importantly, is there really anything people can do to prevent it?
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Dr. Meric-Bernstam: Lymphedema is probably number 1 or number 2 on the list of concerns for women undergoing breast surgical treatment. Overall, among women who undergo lymph node dissection, probably the rate of lymphedema is around 15% to 20%; and really the harder you look, the more you will find it.[7,8]

If you do volumetric measurements, the numbers are much higher than [would be indicated by] women who just have actual symptoms.[9] The symptoms can be as subtle as just feeling a heaviness in your arm or much more dramatic, such as significant swelling of the arm.

Probably the best approach is prevention. We are lucky now as compared with a decade ago: sentinel node biopsy was a major improvement in surgical technology. I think for women who are clinically node-negative now, sentinel node biopsy in experienced hands is an appropriate approach.
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Women who have a lymph node dissection because either the sentinel node biopsy failed or the lymph nodes were involved should have early referral to physical therapy and fitting with lymphedema sleeves as necessary. Although there are fewer data, manual massage appears to decrease lymphedema overall. Also very important is an overall awareness on the part of the patient of the importance of protecting that arm from infection. Many women develop lymphedema after an infection in that hand or arm, which just propagates the increased risk for lymphedema.

Dr. Winer: Here is an example of the question I get asked most commonly: The patient has no lymphedema; she is entirely asymptomatic, not even any heaviness. She is traveling from Boston to San Francisco on a plane. Should she be getting a sleeve to put on for that trip?

Dr. Meric-Bernstam: The National Lymphedema Network (http://www.lymphnet.org/home.htm) suggests that patients who are at high risk, especially if they had a lymph node dissection and radiation, should be referred to physical therapy and consider lymphedema prevention in that setting.[10]

Dr. Winer: Is there evidence?

Dr. Meric-Bernstam: This is an area where unfortunately there is not adequate evidence to support using the sleeve.

Dr. Partridge: But there is a lot of anecdotal [evidence], and it is a low-risk intervention. This is an area where I tell patients: you have to make sure the treatment is not worse than the disease, or the prevention is not worse than the potential disease. A lot of people are more comfortable wearing a sleeve, and if it is low risk for them to do it, I write them a prescription.
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Dr. Winer: Other complications after local therapy include infections in a reconstructed breast or problems in general with reconstruction. I sometimes tell people that reconstruction means taking on a medical problem forevermore. Of course, it depends on the kind of reconstruction. What kinds of problems are most common for a woman who has had reconstruction?

Dr. Meric-Bernstam: Probably the 2 most common approaches to reconstruction are autologous reconstruction with TRAM [transverse rectus abdominis myocutaneous] flap or a DIEP [deep inferior epigastric perforator] flap. That approach has a set of complications where the upfront surgery is, of course, more intensive and the hospital stay is longer, but longer-term complications are fewer. The first couple of years are peppered with questions regarding the feel of the breast and the cosmesis of the breast. In the first few months, the texture of the reconstruction is changing. There is fat necrosis, which sometimes leads to lumpiness/bumpiness of the reconstructed breast. This often leads to some anxiety on the part of the physician as well as the patient, and we do more intensive imaging with an ultrasound at that point if there is a change in the breast texture. Fat necrosis often can be differentiated just by imaging with ultrasound. A percutaneous biopsy is obtained if needed. Our routine at MD Anderson is not to do imaging of reconstructed breasts in the absence of symptoms or new physical exam findings. However, this is an area that is a little more controversial. Again, there are inadequate data for imaging the reconstructed breast.

Tissue expanders and subsequent implants have longer-term complications in that women may have capsular contractures over many years, so they often may need further revisions.

I think reconstruction is a critical element of feeling well after breast surgery.

Dr. Winer: This is information that is often discussed in the setting of choosing between conservative surgery and radiation vs mastectomy and reconstruction. I think people need to be reminded that it is not an entirely free ride to have a mastectomy and reconstruction and that there are problems that can arise later on, so they have to balance these very carefully.

Dr. Meric-Bernstam: It is a delicate balance, of course. A woman who is going to have a poor cosmesis after breast conservation clearly will do better with a mastectomy long-term. It is harder to get a better cosmetic result once you have had a poor cosmetic outcome with breast conservation after radiation, but I think breast surgical oncology has really kept up with the changes in systemic therapy and long-term better outcomes with breast cancer. We have revolutionized the way we treat breast cancer locally, and over the last 5 years there has been a great movement in oncoplastic surgery: we are a lot more aggressive in trying to remove larger tumors and rearranging the residual breast tissue to get a better cosmetic result. With oncoplastic rearrangements, we can offer breast conservation today to women whom we would not have considered as candidates only a few years ago.

Dr. Winer: Ann, what should doctors be telling patients about lifestyle interventions such as diet and exercise after breast cancer?
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Dr. Partridge: Being an ideal body weight and exercising regularly are good things with very rare exceptions, whether you have had breast cancer or not. Starting from that, the evidence in breast cancer survivors is growing and suggests, in retrospective cohort studies, that diet and exercise do seem to matter, although not necessarily in terms of specific dietary interventions. There is some suggestion that a low-fat diet may matter, as was shown in the Women's Health Initiative study.[11]

Patients in that study also lost weight, which makes it difficult to know which was the main causal factor. But that being said, we know that exercise makes people feel good physically; it is good for their mental health and good for their cardiovascular health. Although there are no randomized controlled clinical trials, cohort studies have shown a very strong dose response curve (meaning the more exercise the better) for exercise improving outcomes in breast cancer survivors.[12]
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The other big issue is vitamins and complementary therapy and whether people should be using supplements. The only supplement for which there are any reasonable data at this point is vitamin D, and the data are conflicting.[13,14]

We don't know the right level of vitamin D, and we don't know that supplementation even matters because a large proportion of women, even when they are taking supplements, have been shown to be vitamin D deficient. I tell my patients to take adequate levels of vitamin D as best they can, but I am not even sure when to check them. At this point, I think the jury is out. I tell patients, if they are interested in those things like vitamin D and complementary therapies, to take the standard recommendation, and of course they should be taking vitamin D and calcium for their bone health, which is a whole other area we need to think about for our breast cancer survivors.
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Dr. Winer: I would be remiss if I didn't deal with mental health issues. Mental health issues, including sexual function, are often ignored after a diagnosis of breast cancer. I think that we need to communicate that this is something that doctors need to talk to patients about.

The questions I have for all of you are: (1) when should doctors be asking about a woman's emotional well being, including issues related to sexual function (which is something that as doctors we tend to ignore); and (2) in response to a patient saying she is having difficulty, what should we be doing? Should we routinely be writing antidepressant prescriptions, or should we consider referrals? What do you think, from a patient's perspective, Diana?

Ms. Rowden: I was 38 when I was diagnosed, and I don't remember my oncologist ever saying anything about dealing with sexual function or anything like that. My fear at that time was getting pregnant and not having any good birth control options, so I talked with my gynecologist because I had a good relationship with her. I think it is important for a woman to ask if her oncologist isn't saying something. However, if she has a better relationship with her gynecologist, maybe it is better to have that discussion with [the gynecologist]. But the gynecologist and oncologist have to communicate to make sure they are not doing things that are at odds.

Dr. Winer: Ann and Funda, what is your sense of whether you should be getting out your prescription pad and picking the antidepressant yourself? In some cases, that may be fine, but what do you consider in terms of referrals, when do you think about referring someone to either a social worker or a psychiatrist or, for that matter, a sex therapist?

Dr. Partridge: The National Cancer Institute (NCI) defines cancer survivorship as beginning the day a person is diagnosed with cancer, and I think for all of the issues we are talking about, particularly with regard to psychosocial health, we need to start thinking about this early on in the trajectory of care. Obviously there are a lot of other things you are dealing with during that time, so emotional health does often get put on the back burner, and it then comes up during the transition period or longer-term survivorship. The one thing that providers can do is to recognize it when they see it, especially during some of the later follow-up visits.

We know that patients who go through more intensive treatment and go through menopause with chemotherapy are at high risk of having both emotional and sexual function difficulties later. We can target people who are more vulnerable as well as eliciting discussions and listening to those who may not be at the highest risk but may be having problems.

In terms of whether you write a prescription, I think there is a lot of adjustment to breast cancer, and I think it is okay, except in the extreme cases, to let the dust settle over time. You can then ask about whether they feel they need medication and get a sense of whether they are truly profoundly depressed or just adjusting to their breast cancer diagnosis and survivorship.

Dr. Winer: I think this is also a situation where communication among the members of the healthcare team can be really important. You may see someone in follow-up and need to get a little bit of information about what has been happening when they have been seeing the medical oncologist.
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Dr. Winer: I want to thank all of you for the discussion. I think it has been enormously useful. We are going to end our program after just a few remarks.

No woman ever wants to have breast cancer. For some women, life after breast cancer is actually better than it was before, and we have patients who tell us that having had breast cancer taught them a great deal about themselves and about those around them. There are many other women, of course, who say it is the worst thing that ever happened to them and who dread coming back to see their oncologist and surgeons because it is just a reminder.

No matter what a woman's reaction is, we as doctors and as healthcare professionals need to help that woman (and occasionally the man) with breast cancer adjust to this period of time after breast cancer. Hopefully this will be a very, very long period of time because the vast majority of individuals who develop breast cancer go on to survive that diagnosis and live a very long life.

We have talked today about some of the medical and psychological concerns that can come up after the diagnosis of breast cancer, but we have just scratched the surface.

I want to thank my colleagues on the panel today, Dr. Meric-Bernstam from MD Anderson, Dr. Partridge from Dana-Farber, and Ms. Rowden from Susan G. Komen for the Cure.
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