There were two unique presentations today that were less about heady science and more about changing the paradigm of research and how doctors practice. It was a refreshing perspective on the big picture and how we can change direction to make bigger strides in research rather than the small baby steps that make some feel like we are standing still while the cancer world spins around us.
The morning talk was by Dan Ariely, an Israel born Professor of Psychology and Behavioral Economics who teaches at Duke University. I’ll admit I had never heard of him when he stepped up to the podium. His talk was a fascinating glimpse into a non-cancer specific examination of the decision making practice that can be applied to healthcare providers and how they consult with their patients. I wish he had had more time to speak, because he only just touched on the issues he has published in his bestsellers, Predictably Irrational and Upside of Irrationality. He explores that we are often trained into what becomes our “gut reaction,” and that this instinct can often be guided by so many other societal pressures, and often it is flat out wrong. He challenged the audience of researchers, advocates and healthcare providers to consider a paradigm shift from status quo or standard practice and really think of what is best for each patient rather than what is easy, takes less work, or may be counterintuitive. He gave an example of something called, “The Jam Study” in which people where given 24 choices as opposed to 6 choices of jam and the sheer quantity of choices made the person less likely to buy jam at all. The argument could be made that this is a study of people’s choice in fruit preserves and not something nearly as important as major healthcare decisions, but his data actually proves otherwise. Healthcare providers need to be mindful that a balance needs to be struck with patients in providing good viable options, but overwhelming the patient, without coming alongside them to make sure they are properly educated, can cause the patient to shut down and refrain from really considering the details and real cost of all options.
In the afternoon, Dr. George Sledge from Indiana University Simon Cancer Center (and current president of ASCO, the American Society of Clinical Oncology) gave the Willliam L. McGuire Memorial Lecture (a honor given once a year in memory of Dr. McGuire, one of the founders of the SABCS.) By the title, “What would Bill do? Channeling your inner McGuire” it would seem, at first glance, like a witty discussion on the state of where research is going. Dr. Sledge did not mince words in really laying out some priority changes that need to happen within breast cancer research if we want to get serious about finding cures. His seven point “rules” touched on some important issues that are being ignored by many researchers. His primary issue was the respect we need to have for the tissue sample itself; keeping it long term, obtaining demographics around it, and collecting normal breast tissue for comparison. (For the record, Susan G. Komen for the Cure has established the Komen Tissue Bank at Indiana University for exactly this purpose.) Dr. Sledge also spoke to the importance of the research environment both in practice and the people who practice it. He chided the room to be serious in pushing for clinical trials rather than becoming dependent on diagnostic studies. He also sang the praises of how he had surrounded himself with “excellence” but working alongside great researchers who were always willing to challenge the status quo. Most importantly, Dr. Sledge reminded us that, “The Clinic is the final Laboratory.”
This tremendously important issue calls to mind that just because something works in cell-lines, mouse models, or data sets, does not mean it will work in the human patient. The media is quick to jump on data showing huge promise in these models (see the excitement over breast cancer vaccine studies) but the reality is, we just have not seen most of these exciting advancements in the human being. Last time I checked I was not a rodent, and thankfully my research validity did not die after 14 days when I was dissected for research. These are, of course, important stepping stones in the research process, but need to be considered for what they are, simply a start.
Saturday, December 11, 2010
The Negative is just as important as the positive
At the end of each day of the San Antonio Breast Cancer Symposium (SABCS) the Alamo Breast Cancer Foundation hosts a, “Hot Topic” review session to give advocates a day in review of some of the stand-out information from each day’s presented studies. It brings together noted figures in the field of breast cancer research, including doctors and basic science researchers to provide feedback and sometimes commentary on what we have learned that day. Attended mostly by advocates, this session is a snapshot of our progress made in various areas of drug use, surgical technique, basic science research, trial data, poster review and noted findings.
There is a clear bias in reporting in this country to publish data from cancer research that presents positive results. It may be more exciting, it may be to preserve funding sources, it may be professional affirmation, but the negative findings (or where a researcher does not prove their given hypothesis) is often hidden from view or not given as much attention. This negative data reporting is just as important as positive advances made in various areas. Without this data we are not steered away from treatment that may cause harm, treatments that are simply wasting our time and resources or spinning our wheels in looking in the same places for cures that just are not present.
First, we must understand how we define success in a trial. There are several important measurements of success depending on the trial and how it is measured. Overall Survival (OS) is the chance that someone will survive a disease. A 5-year OS means, “What is the chance that the patient will be alive in 5 years?” Disease Free Survival (DFS) means what are the chances that the patient will not only be alive, but will be disease free in that time period. Progression Free Survival (PFS) is often used in stage 4 measurements to indicated how long a patient’s disease remains stable without indication of growing disease, spreading disease or progression of disease. Whether five years is long enough to truly measure the success of an intervention is a growing debate, and there is more support given to studies that show results in terms of 10 year or more results. However, this is difficult to fund, report on and impractical to many research situations.
Today, there was data presented from the AZURE trial that a hopeful drug used traditionally for bone loss or osteoporosis issues, a Zoledronic Acid (also known by the trade name Zometa), may not have the awesome promise of preventing breast cancer recurrence as we had hoped. There is some small data within this study that suggests it might still be a benefit for women who have been in menopause for 5 or more years, but more research is needed to confirm this sub-analysis.
A study looking at the drug capecitabine (trade name Xeloda) hoping to gain an advantage by combining it with a commonly used chemotherapy of a taxane for use in early stage cancers also showed no benefit over the the current use of taxanes alone. It is still showing benefit in the metastatic setting, but the hope that this drug, that does not cause hair loss and can be less severe in side effects for early stage cancers, is not the great alternative it was hoped to be.
A study examining the consistency of metastatic pathological results with the primary tumor gave a sobering result in a study that as much as 26% of metastatic tumors had a different pathology than the original primary tumor, with either loss of HER2, or hormone receptor changes. This result was particularly alarming because it is not standard of care to biopsy a metastatic lesion to make sure it matches the original tumor. Therefore, the risk of not using available treatments, or over treating a new and different tumor type is a very real concern.
Several advocates, researchers and physicians have made the observation that a great deal of studies being presented this week are from areas outside the United States. Some smaller countries like Finland, Austria, Norway and Spain are presenting big data and really putting the US to shame in their accrual rates for trials. From the US we can put a man on the moon or create the atomic bomb, but we are still trying to keep up with the ability of our smaller research counterparts to provide such great data from research. At the Hot Topics session, this question was briefly addressed with suggestions that perhaps this is because of socialized medicine in other countries which encourage the governments to support research into cheaper and more effective treatments to get the best, “bang for their buck.” Perhaps it is the over-regulation in the US that has made researchers and institutions become bogged down in 20-page waivers and lawyers hovering. It might be the government’s terrible lack of funds in supplying funding for the administrative needs that come from trial oversight, registry and maintenance. Whatever the reason, it is a clear area where advocates in the US can and should demand better and push for a process and resources that can make the trial process and enrollment more accessible to patients and researchers.
There is a clear bias in reporting in this country to publish data from cancer research that presents positive results. It may be more exciting, it may be to preserve funding sources, it may be professional affirmation, but the negative findings (or where a researcher does not prove their given hypothesis) is often hidden from view or not given as much attention. This negative data reporting is just as important as positive advances made in various areas. Without this data we are not steered away from treatment that may cause harm, treatments that are simply wasting our time and resources or spinning our wheels in looking in the same places for cures that just are not present.
First, we must understand how we define success in a trial. There are several important measurements of success depending on the trial and how it is measured. Overall Survival (OS) is the chance that someone will survive a disease. A 5-year OS means, “What is the chance that the patient will be alive in 5 years?” Disease Free Survival (DFS) means what are the chances that the patient will not only be alive, but will be disease free in that time period. Progression Free Survival (PFS) is often used in stage 4 measurements to indicated how long a patient’s disease remains stable without indication of growing disease, spreading disease or progression of disease. Whether five years is long enough to truly measure the success of an intervention is a growing debate, and there is more support given to studies that show results in terms of 10 year or more results. However, this is difficult to fund, report on and impractical to many research situations.
Today, there was data presented from the AZURE trial that a hopeful drug used traditionally for bone loss or osteoporosis issues, a Zoledronic Acid (also known by the trade name Zometa), may not have the awesome promise of preventing breast cancer recurrence as we had hoped. There is some small data within this study that suggests it might still be a benefit for women who have been in menopause for 5 or more years, but more research is needed to confirm this sub-analysis.
A study looking at the drug capecitabine (trade name Xeloda) hoping to gain an advantage by combining it with a commonly used chemotherapy of a taxane for use in early stage cancers also showed no benefit over the the current use of taxanes alone. It is still showing benefit in the metastatic setting, but the hope that this drug, that does not cause hair loss and can be less severe in side effects for early stage cancers, is not the great alternative it was hoped to be.
A study examining the consistency of metastatic pathological results with the primary tumor gave a sobering result in a study that as much as 26% of metastatic tumors had a different pathology than the original primary tumor, with either loss of HER2, or hormone receptor changes. This result was particularly alarming because it is not standard of care to biopsy a metastatic lesion to make sure it matches the original tumor. Therefore, the risk of not using available treatments, or over treating a new and different tumor type is a very real concern.
Several advocates, researchers and physicians have made the observation that a great deal of studies being presented this week are from areas outside the United States. Some smaller countries like Finland, Austria, Norway and Spain are presenting big data and really putting the US to shame in their accrual rates for trials. From the US we can put a man on the moon or create the atomic bomb, but we are still trying to keep up with the ability of our smaller research counterparts to provide such great data from research. At the Hot Topics session, this question was briefly addressed with suggestions that perhaps this is because of socialized medicine in other countries which encourage the governments to support research into cheaper and more effective treatments to get the best, “bang for their buck.” Perhaps it is the over-regulation in the US that has made researchers and institutions become bogged down in 20-page waivers and lawyers hovering. It might be the government’s terrible lack of funds in supplying funding for the administrative needs that come from trial oversight, registry and maintenance. Whatever the reason, it is a clear area where advocates in the US can and should demand better and push for a process and resources that can make the trial process and enrollment more accessible to patients and researchers.
Thursday, December 9, 2010
Power to the patient
There were three main sessions today at the San Antonio Breast Cancer Symposium (SABCS) that had some of my fellow advocates discouraged that we weren’t getting very far on the fight against breast cancer. I saw them a little differently, giving some of the power to the patient to decide how they are going to attack breast cancer without having to worry about overcomplicated issues clouding their decisions. A session in the morning on various endocrine treatments for hormone positive cancers and their comparisons of effectiveness. A mid-day heated discussion on the evidence for and against changing mammography guidelines for women ages 40-49. Then in the afternoon a frank look at BMI (Body Mass Index) and survival outcomes for women with breast cancer.
At first glance, all three seemed to be a recycle of the same issues and no new really revolutionary findings, but what I saw in these sessions was the ability for the patient to have some control in screening, treatment and even long term outcomes.
The first session presented data from eight trials looking at various endocrine therapies (primarily Aromatase Inhibitors or “AI’s”) with trade names like: Arimedex, Aromasin and Femera. Each study wanted to examine the effectiveness of different AI’s verses Tamoxifin or each other or perhaps in different doses over different time periods. The simplified bottom line, to most of these studies, is that that new medicines are not working much more effectively than some of the old standards and that most AI’s can be interchangeable without sacrificing efficacy. This may seem discouraging to those of us looking for the next great cure, but the silver lining in all this, is that that the old (and often much cheaper) drugs can work for patients. Also, it means that if patients are having issues with AI’s , such as joint pain, they can try other AI’s and not feel like they are sacrificing their long term outcomes. This may seem like a step backward, but it is a short term victory for patients who don’t have access or funding for the latest and greatest drugs being offered on the market.
At the session on Mammography guidelines, the audience knew it was in for some varied opinions just from the title, “Controversies in Screening for Breast Cancer.” I don’t think anyone walked into that room naïve enough to think the mammography debates would be solved within an hour’s time, but some great diverging opinions (all fairly well supported with various studies) definitely emerged. The one area all seemed to agree on was that WAY more information was needed to assess the whether benefits outweigh the harms for patients, especially those in the age 40-49 age group, before everyone can feel confident a concrete guideline can be set. The standard for success also needs to show the full range of outcomes including; surgery type, treatment, chemotherapy, node involvement and most often missed, quality of life. Five year survival rates, are not the only outcome that is important. A question from the audience was very telling, “Can we trust, already overburdened, primary care doctors to be knowledgeable enough about what constitutes a high risk patient, when guidelines suggest they are suppose to help guide patients through this decision process?” Applause erupted. At the end of the day, the burden falls to the patient. We are the ones that need to equip ourselves to know our family history, possible genetic counseling and our breast cancer risks. In this day and age, there is little excuse to access of information. A greater concern can definitely be put on the quality of this information, but this problem is one we can solve. The patient has the power to seek opinions to more knowledgeable providers if needed. The patient has the power to ask questions when they are unclear. The patient has the power to contact government programs, local advocacy groups and their insurers to get services if needed. These resources, while often strained, are available and can be a great catalyst to worthy change of the system.
Lastly, a sobering reality on the direction of general health concerns in our country. A session covering three studies looking at the role of obesity, as measured by Body Mass Index (BMI), and how it affects outcomes in effectiveness of treatment, recurrence rates, disease free survival and overall survival. All three studies showed that for women who have hormone positive and HER2- breast cancer have worse outcomes in several areas. Even when they account for dosage and account for levels of medicine relative to body size, the women who had a BMI of 30 or greater had significantly worse outcomes than those who had less BMI. Of those women who did have a recurrence, their average time of recurrence to death was also shorter. It can be hard not to feel like if you are an obese woman and you are diagnosed with breast cancer that you do not have a death sentence. However, this research has spurred researchers to look very seriously at lifestyle change, nutritional counseling and reducing BMI as a real viable option in helping women reduce their recurrence rates. This should be looked at as a positive message that women have an issue that they can work at to make a real change in their outcomes. The power is in the patient to make healthy lifestyle choices and reduce their BMI to make a measureable change in reducing their future breast cancer risks. More research is needed in how quickly and to what level these changes can be made to make the most impact on these numbers.
At first glance, all three seemed to be a recycle of the same issues and no new really revolutionary findings, but what I saw in these sessions was the ability for the patient to have some control in screening, treatment and even long term outcomes.
The first session presented data from eight trials looking at various endocrine therapies (primarily Aromatase Inhibitors or “AI’s”) with trade names like: Arimedex, Aromasin and Femera. Each study wanted to examine the effectiveness of different AI’s verses Tamoxifin or each other or perhaps in different doses over different time periods. The simplified bottom line, to most of these studies, is that that new medicines are not working much more effectively than some of the old standards and that most AI’s can be interchangeable without sacrificing efficacy. This may seem discouraging to those of us looking for the next great cure, but the silver lining in all this, is that that the old (and often much cheaper) drugs can work for patients. Also, it means that if patients are having issues with AI’s , such as joint pain, they can try other AI’s and not feel like they are sacrificing their long term outcomes. This may seem like a step backward, but it is a short term victory for patients who don’t have access or funding for the latest and greatest drugs being offered on the market.
At the session on Mammography guidelines, the audience knew it was in for some varied opinions just from the title, “Controversies in Screening for Breast Cancer.” I don’t think anyone walked into that room naïve enough to think the mammography debates would be solved within an hour’s time, but some great diverging opinions (all fairly well supported with various studies) definitely emerged. The one area all seemed to agree on was that WAY more information was needed to assess the whether benefits outweigh the harms for patients, especially those in the age 40-49 age group, before everyone can feel confident a concrete guideline can be set. The standard for success also needs to show the full range of outcomes including; surgery type, treatment, chemotherapy, node involvement and most often missed, quality of life. Five year survival rates, are not the only outcome that is important. A question from the audience was very telling, “Can we trust, already overburdened, primary care doctors to be knowledgeable enough about what constitutes a high risk patient, when guidelines suggest they are suppose to help guide patients through this decision process?” Applause erupted. At the end of the day, the burden falls to the patient. We are the ones that need to equip ourselves to know our family history, possible genetic counseling and our breast cancer risks. In this day and age, there is little excuse to access of information. A greater concern can definitely be put on the quality of this information, but this problem is one we can solve. The patient has the power to seek opinions to more knowledgeable providers if needed. The patient has the power to ask questions when they are unclear. The patient has the power to contact government programs, local advocacy groups and their insurers to get services if needed. These resources, while often strained, are available and can be a great catalyst to worthy change of the system.
Lastly, a sobering reality on the direction of general health concerns in our country. A session covering three studies looking at the role of obesity, as measured by Body Mass Index (BMI), and how it affects outcomes in effectiveness of treatment, recurrence rates, disease free survival and overall survival. All three studies showed that for women who have hormone positive and HER2- breast cancer have worse outcomes in several areas. Even when they account for dosage and account for levels of medicine relative to body size, the women who had a BMI of 30 or greater had significantly worse outcomes than those who had less BMI. Of those women who did have a recurrence, their average time of recurrence to death was also shorter. It can be hard not to feel like if you are an obese woman and you are diagnosed with breast cancer that you do not have a death sentence. However, this research has spurred researchers to look very seriously at lifestyle change, nutritional counseling and reducing BMI as a real viable option in helping women reduce their recurrence rates. This should be looked at as a positive message that women have an issue that they can work at to make a real change in their outcomes. The power is in the patient to make healthy lifestyle choices and reduce their BMI to make a measureable change in reducing their future breast cancer risks. More research is needed in how quickly and to what level these changes can be made to make the most impact on these numbers.
Wednesday, December 8, 2010
What to do with the high risk patient?
There is a small population of women in the world who carry a gene mutation called BRCA 1 or BRCA 2. BRCA (a simple abbreviation from the first to letters of Breast and Cancer), is not the only gene mutation that can lead to higher incidence of breast cancer. Unfortunately, not all families that have a strong family history of breast cancer also have a known or detectable gene mutation. So if one falls into one of these high risk groups that either has a strong family history of breast cancer or carries a gene mutation, what are they supposed to do?
I am part of one of those families. I was diagnosed at age 31 with breast cancer, but I was aware before that time that our family line (my mother’s side) had not only a high incidence of breast cancer (I had had 4 aunts who had been diagnosed by the time I was), but also that within our family line, lingered this BRCA2 mutation. So for the growing awareness clinicians have for the population of people (both men and women) who are learning they are positive for a gene mutation or are keenly aware of a strong family history of breast cancer, there is growing concern on how to treat these groups clinically.
Today at the San Antonio Breast Cancer Symposium three studies were presented that examine this growing controversy:
“Evaluation of breast cancer predisposition in different clinical venues” by Sharon E. Plon, MD, PhD, from Baylor College of Medicine
“Management of women with highly penetrant predisposition to breast cancer: State of the art 2010” by Susan M. Domchek, MD, University of Pennsylvania
“Challenges to clinical application of new discoveries in the genetics of breast cancer predisposition.” By Mark E. Robson, Memorial Sloan-Kettering Cancer Center
All three presenters recognized that there is a vast difference on how the clinician has been handling these high risk groups and more evidence is needed to equip these doctors on how to deal with genetic mutation carriers. Women are scared that their only option is that they will be asked to cut off their breasts or, “rip out body parts,” as one woman put it. They don’t even realize that there are other prevention options and screening techniques that can give them an edge.
For those who do choose prophylactic mastectomy their risk for breast cancer is reduced by at least 90%. Depending on which gene mutation, some people can have a lifetime risk of developing breast cancer as high as 85%, this is a sobering reality.
It was disappointing to learn that these studies show a huge variance not only in how these high risk groups are being treated, but seemingly in how educated the clinicians are themselves on some of these risk factors.
If we are going to continue to discover new gene mutations, we need to turn these discoveries into a two-fold action: First, the therapies or screening techniques that can address these variations, and second, we need to make sure that consistent guidelines are being developed to keep doctors up to date on how they can save lives and equip the patient to make the best decisions for the best possible long term outcomes. Simply mapping genomes is not enough. Dr. Robson mentioned that the possibility of a future where each individual could have a specific mapping of family mutations or gene mutations could be on the horizon. If we do this though, are we opening up a whole other can of worms? What if we find other mutations for other areas of the body? What if we find mutations that would have never caused harm? These are complex issues that require more research, consistent reporting, standards of care and a constant ear to the individualized patient’s long term outcomes.
I am part of one of those families. I was diagnosed at age 31 with breast cancer, but I was aware before that time that our family line (my mother’s side) had not only a high incidence of breast cancer (I had had 4 aunts who had been diagnosed by the time I was), but also that within our family line, lingered this BRCA2 mutation. So for the growing awareness clinicians have for the population of people (both men and women) who are learning they are positive for a gene mutation or are keenly aware of a strong family history of breast cancer, there is growing concern on how to treat these groups clinically.
Today at the San Antonio Breast Cancer Symposium three studies were presented that examine this growing controversy:
“Evaluation of breast cancer predisposition in different clinical venues” by Sharon E. Plon, MD, PhD, from Baylor College of Medicine
“Management of women with highly penetrant predisposition to breast cancer: State of the art 2010” by Susan M. Domchek, MD, University of Pennsylvania
“Challenges to clinical application of new discoveries in the genetics of breast cancer predisposition.” By Mark E. Robson, Memorial Sloan-Kettering Cancer Center
All three presenters recognized that there is a vast difference on how the clinician has been handling these high risk groups and more evidence is needed to equip these doctors on how to deal with genetic mutation carriers. Women are scared that their only option is that they will be asked to cut off their breasts or, “rip out body parts,” as one woman put it. They don’t even realize that there are other prevention options and screening techniques that can give them an edge.
For those who do choose prophylactic mastectomy their risk for breast cancer is reduced by at least 90%. Depending on which gene mutation, some people can have a lifetime risk of developing breast cancer as high as 85%, this is a sobering reality.
It was disappointing to learn that these studies show a huge variance not only in how these high risk groups are being treated, but seemingly in how educated the clinicians are themselves on some of these risk factors.
If we are going to continue to discover new gene mutations, we need to turn these discoveries into a two-fold action: First, the therapies or screening techniques that can address these variations, and second, we need to make sure that consistent guidelines are being developed to keep doctors up to date on how they can save lives and equip the patient to make the best decisions for the best possible long term outcomes. Simply mapping genomes is not enough. Dr. Robson mentioned that the possibility of a future where each individual could have a specific mapping of family mutations or gene mutations could be on the horizon. If we do this though, are we opening up a whole other can of worms? What if we find other mutations for other areas of the body? What if we find mutations that would have never caused harm? These are complex issues that require more research, consistent reporting, standards of care and a constant ear to the individualized patient’s long term outcomes.
Let the games begin.....
What do you get when you put 36 advocates, leaders from advocacy groups large and small, and survivors in a room with at least 5 representatives from the biggest pharmaceutical companies? No, its not the start of a bad joke, it’s the start of the San Antonio breast cancer symposium. Last night this group of advocates gathered for a welcome dinner. We shared our stories of what brought us to this day, how our advocacy journey started and what we hoped to do for the future. There was talk of the National Breast Cancer Coalition’s (NBCC) 2020 Breast cancer deadline campaign, mention of new mammography guidelines, friends lost, sisters saved and a general theme that all of our children need to be spared from the battle we have lived.
I have said it before, but if the cure to breast cancer was based on the character of the warriors fighting to end it, we would have found a cure a long time ago. Everyone in that room, around those tables and entering those doors have made a sacrifice to be there. A sacrifice in time, money, physical health, cultural barriers, or sheer distance. We had advocates from every corner of the world. Remote islands, New Zealand, Egypt, Nigeria, Scotland, Australia, and every corner of the United States. It is humbling to belly-ache about the healthcare or cancer problems in this country only to hear the story of a Nigerian woman whose sister died of breast cancer, having not told anyone of the lump she found because of lack of proper treatment and cultural stigma. The picture of how many people we are fighting for grows bigger. We suddenly realize the diversity of this non-biased disease and realize a cure in any country can have a worldwide impact on saving lives.
This morning (Wednesday) is the first day of the SABCS. For us advocates, our job starts early. The NBCC offers a free session for advocates called the “Project LEAD Advance Topic Session.” (Project LEAD is a premiere science training course provided by NBCC to equip advocates to have an educated seat at the table with researchers in the ongoing dialogue of breast cancer science.) NBCC brings in top researchers from cutting edge institutions all over the country to give a brief overview of some of the highlights of research in the past year and being shared in coming days at the SABCS. It's an intense science session, with the correct assumption, that most of the advocates in the room are highly trained and educated and don’t need the information “dumbed down.” Issues of genetics, metastasis, stem cells, biomarkers, personalized medicine, cell biology, radiation and major areas of concern are addressed in a quick overview to highlight some of the most promising new or developing science.
This afternoon, SABCS officially begins for the rest of the attendees, from 2:00 – 7:00 pm) there will be several types of sessions over the next few days:
- Educational Sessions: Designed to provide people with a better understanding of the talks they hear using the techniques that will be described. The provide researchers with a guide to the techniques they should be considering for their studies
- Panel Discussions: A group of researchers, healthcare providers, doctors and/or advocates that consult on clinical practices and best methods and collaborative ideas
- Mentor Sessions: Exclusive to the advocacy community, these sessions match advocates with top researchers and clinicians to provide upcoming highlights and clarification on issues that may be and are being presented this week during the SABCS
- Networking Sessions: Bringing together groups to foster collaboration, such as young investigators, like sciences, similar methods and like interests
- Plenary Sessions: A large session that brings together all attendees. If often contains the highlights of the year, exciting new developments that would be of interest to the entire research community. It is a platform for awards and recognition of innovative research and researchers pushing the limits to make real advancement. On the last day a “Year in Review” session brings together a synopsis of some of the research highlights from 2010.
- General Sessions: Researchers will present their individual studies and their latest findings. It is usually divided into several presenters with a set time to present their findings and slides. Most general sessions have a theme where groups of similar areas of research are presented in sequence as the same session.
- Clinical Science Forums: A dialogue amongst clinicians and researchers on some of the more controversial topics and how we should view the various sides and parties involved. Often contains a panel of various parties to comment on how these issues affect different demographics and decision makers.
- Poster Sessions: A room filled with posters lined on the walls. Each representing an individual research project from a principal investigator, post-doctoral , pre-doctoral researcher, clinician or (in fewer instances) an advocacy group. A poster discussion pulls out some the stand-out posters with positive or negative results from their original hypothesis, to create a dialogue on the direction for future or ongoing research.
- Case Discussion: A Panel of clinicians, researchers and advocates where actual patient scenarios are presented and arising problems address with the expertise of the panel with comments on new suggestions, perspectives of treatments, outcomes and novel approaches.
Please use these descriptions as your guide to the context the research to be reported on, by myself and various other groups coming out of the SABCS this week.
Monday, December 6, 2010
The Newbie's view to the San Antonio Breast Cancer Symposium (SABCS)
Tomorrow morning at 7 am I embark on a new journey. For the first time I will be attending the San Antonio Breast Cancer Symposium (SABCS). In the world of breast cancer research, for advocates, researchers and medical professionals it is the pinnacle of the year in breast cancer research dissemination. There are other major cancer conferences (ASCO, AACR, and satellite meetings) but most breast cancer professionals would agree that SABCS receives the most hype and is the most disease specific of all the cancer conferences. So in my 4+ years in breast cancer advocacy, why is this the first time I am going? Well, first off, its at a really bad time of year. A mere two weeks before Christmas, the life of a young breast cancer advocate gets clouded with kids' school plays, Christmas concerts and end-of-year craziness. Also, December can present some pretty crazy weather scenarios that have left me trapped in a random airport on more than one occasion. Lastly, and the most common reason great advocates cannot be everywhere they need to be, is that there is little or no pay or funding for breast cancer advocacy. Most of what I do requires a scholarship from some organization and these funding sources are often few and far between. There are few organizations and institutions that really value the input of advocates enough to invest in this important resource. (I will have to dedicate another blog entry for that later.) For now, I attend my first SABCS courtesy of a scholarship from the Alamo Breast Cancer Foundation.
Background
In 1997 the San Antonio Breast Cancer Symposium directors, Charles A. Coltman Jr. M.D. and C. Ken Osborne, M.D., requested that the Alamo Breast Cancer Foundation develop, organize and facilitate an advocate program in conjunction with the annual symposium. The directors saw the need for an advocate program because of the increasing Symposium attendance of advocates and the absence of specific planned activities to acknowledge their presence and their interest in breast cancer research. With the Symposium directors' encouragement and support, the first Alamo Breast Cancer Foundation Advocate Program was held in December 1998 in association with the 20th Annual San Antonio Breast Cancer Symposium.
Purpose
The Alamo Breast Cancer Patient Advocate Program is designed to increase the dissemination of the latest breast cancer research findings from the Annual San Antonio Breast Cancer Symposium. Breast cancer advocates from the United States, Canada and worldwide are funded through the program to attend the Annual Symposium. Each funded advocate is assigned and expected to attend all Symposium sessions, talks, and poster sessions relevant to a particular assigned topic and to prepare a written "Hot Topic" report summarizing information on the topic. "
So what is SABCS? Why should you care? What does this meeting mean for survivors and medical professionals? How do I get involved from the comfort of my home?
In the next few days, I will be blogging about the meetings I attend (both large and small.) Some 9,000 attendees will pour into San Antonio from all over the world to hear researchers share the latest and greatest on what they have or will publish in various aspects of breast cancer research. From treatments to surgery to prevention, almost every major development that has come in breast cancer in recent years, as had a forum at the SABCS.
Details on the origin of the SABCS can be found here: Interview with some of the founders of SABCS
From an interview with Dr. C. Kent Osborne, one of the founders of the SABCS....
C. Kent Osborne, M.D., Co-Founder, San Antonio Breast Cancer Symposium: Well, it started, 32 years ago, when a group of us at the time, at the University of Texas Health Science Center in San Antonio decided to start an educational meeting for local oncologists.
Background
In 1997 the San Antonio Breast Cancer Symposium directors, Charles A. Coltman Jr. M.D. and C. Ken Osborne, M.D., requested that the Alamo Breast Cancer Foundation develop, organize and facilitate an advocate program in conjunction with the annual symposium. The directors saw the need for an advocate program because of the increasing Symposium attendance of advocates and the absence of specific planned activities to acknowledge their presence and their interest in breast cancer research. With the Symposium directors' encouragement and support, the first Alamo Breast Cancer Foundation Advocate Program was held in December 1998 in association with the 20th Annual San Antonio Breast Cancer Symposium.
Purpose
The Alamo Breast Cancer Patient Advocate Program is designed to increase the dissemination of the latest breast cancer research findings from the Annual San Antonio Breast Cancer Symposium. Breast cancer advocates from the United States, Canada and worldwide are funded through the program to attend the Annual Symposium. Each funded advocate is assigned and expected to attend all Symposium sessions, talks, and poster sessions relevant to a particular assigned topic and to prepare a written "Hot Topic" report summarizing information on the topic. "
So what is SABCS? Why should you care? What does this meeting mean for survivors and medical professionals? How do I get involved from the comfort of my home?
In the next few days, I will be blogging about the meetings I attend (both large and small.) Some 9,000 attendees will pour into San Antonio from all over the world to hear researchers share the latest and greatest on what they have or will publish in various aspects of breast cancer research. From treatments to surgery to prevention, almost every major development that has come in breast cancer in recent years, as had a forum at the SABCS.
Details on the origin of the SABCS can be found here: Interview with some of the founders of SABCS
From an interview with Dr. C. Kent Osborne, one of the founders of the SABCS....
C. Kent Osborne, M.D., Co-Founder, San Antonio Breast Cancer Symposium: Well, it started, 32 years ago, when a group of us at the time, at the University of Texas Health Science Center in San Antonio decided to start an educational meeting for local oncologists.
Margaret Foti, Ph.D., M.D., CEO, American Association for Cancer Research: This is the most important breast cancer meeting in the world, it’s the largest and it has all of the major experts around the world coming.
C. Kent Osborne, M.D.: We started the symposium right about the time, fortuitous perhaps, right about the time that we were beginning to make an impact on the disease, probably as a result of the war on cancer. It was initiated, I think, in 1972, more money was put into cancer research, we began to see the fruits of that, and so we were at the right place at the right time.
NARRATOR: Since 1978 the mission of the San Antonio Breast Cancer Symposium has been to provide state of the art information on breast cancer research.
C. Kent Osborne, M.D.: We organized a small meeting with 40 or 50 attendees – had it at a motel out by the airport and that’s how it started. We brought in outside speakers – and really good speakers, but it was for a local audience.
Margaret Foti, Ph.D., M.D.: This was the brain-child of Doctor McGuire and his colleagues.
C. Kent Osborne, M.D.: Bill McGuire, who was really the instigator, if you will, of the symposium and he was the head of the oncology division at the time, decided that maybe we should be a venue for reporting new research results.
NARRATOR: From a one-day regional conference, the symposium has grown to a four-day program attended by a broad international audience from over 90 countries.
Margaret Foti, Ph.D., M.D.: This really grew out of a desire to focus on breast cancer as a disease.
C. Kent Osborne, M.D.: And it went from 50 attendees back in 1978 to 9,000 today.
So that's how it started, so why does it matter if advocates and survivors are in attendance and how do I follow them?
We are entering an era of a more educated consumer and patient. With access to the internet and growing healthcare costs, patients are empowering themselves to make the most informed decisions for themselves. They want access to cutting edge information that is CURRENT and RELEVANT to their disease types and their demographic. In a nutshell, personalized medicine is here to stay. When trained advocates (like myself) attend these meetings we can give the consumer a view into the latest research with greater access and often needed translation to equip them to find the best information for their needs. Over the next week organizations such as National Breast Cancer Coalition (NBCC) http://www.knowbreastcancer.org/, Susan G. Komen for the Cure: www.komen.org, Alamo Breast Cancer Foundation http://alamobreastcancer.org/advocacy.html. and publications like, Cure Today magazine www.curetoday.com will have representatives reporting on the latest findings and highlighting relevant information for consumers to use. Follow me on Twitter (my username is "Javabuz" and the hashtag for the conference is #SABCS). In the meantime, check back here this week and I will save you a seat alongside myself in San Antonio...
Wednesday, December 1, 2010
Happy Anniversary USPSTF Mammography Guidelines, you are lookin' a little old for your age.
As December is upon us and stores fill with the reminder that yet another holiday season is upon us, we think of another fast approaching anniversary. In December 2009 the USPSTF’s release of new suggested mammography guidelines. A strange event to commemorate you might think, but one that is very important in the world of breast cancer advocates and health care providers. Just this morning, another study was released to throw a wrench in the gears of this ever increasing confusion. A study presented at the annual meeting of the Radiological Society of North America (RSNA) shows a decrease in mastectomy rates for women undergoing yearly mammography. A report on the study can be seen here: http://tinyurl.com/39cfckc
Health reporters have already jumped on the assumption that this means the cancer is caught earlier and thus it would seem natural to assume that an earlier diagnosis changes long term survival rates, this too is a source of controversy. One that makes us all very nervous and probably not for the reasons you would guess.
The new guidelines created a ripple felt around the country as we had a dialogue about needed healthcare reforms and improving preventative medicine. The new guidelines called into question the need for every woman to have yearly mammogram after the age of 40. Immediately, a divide was created, but not necessarily amongst the groups you might think. It was not just the ones who pay for mammograms vs. the ones who receive them. Breast cancer advocacy groups themselves took divisive stances on the issue. Some site the need to stick by available research that does not clearly indicate a benefit to yearly mammography in the age 40-50 age group, some yelling back that the research has major holes and does not clearly reflect all the benefits to of catching cancer earlier. We have put all our eggs in the basket of whether early detection saves lives in the long run, but is that enough? We have not established a good measure for quality of life (yes, I may live longer, but what if I am too tired to play with my kids?) We do not have a good reporting system for levels of treatment (what if early detection allowed me to have a lumpectomy rather than a mastectomy?) We also don’t have a good reporting method for longevity. Most cancer research is based on the 5-year survival mark, but it has become increasingly difficult to follow-up with survivors after that mark and most funding sources for this research don’t support this level of long-term tracking.
From a cancer survivor’s perspective, this has to be about more than just a yearly mammogram, it has to be about the big picture. It has to be about women’s health and a consistent relationship with her healthcare providers. If we are not tracking the effect of early detection on the whole picture of a woman’s outcome are we really serving her interests? Are we improving healthcare in this country? The bigger danger to not screening women yearly with mammograms is not really about finding lumps, its about giving women a reason to be checked out yearly by a healthcare provider. I know, I know, a blasphemous statement. How can we use mammography with all its false positives and inaccurate technology as an excuse to get women seen by a doctor every year? Simply put... the woman in her 40’s is an a unique window where she, by default, would not be seen yearly by a healthcare provider otherwise. She is too young for colonoscopy (age 50). She is usually too old for childbearing issues. If she is not high risk, she only needs a pap smear every 3 years. In many ways she is at the prime of her life, so why go see a doctor if she isn’t sick? This isn’t even an access issue, as many groups like to claim. The fastest growing demographic of women who are not undergoing regular screening is not poor women in remote areas, as its been portrayed. Its actually well-educated, insured women who just don’t make it a priority. We can’t afford to take a step back in women’s health by giving them one more excuse to avoid a regular visit with a healthcare provider.
Do we really understand what a, “cure” to cancer really looks like? Is a cure about treating cancer into complete remission once it is found, or is a cure an absolute prevention from it developing to begin with? Many people often site polio as a disease we have been successful at curing, but what we have really done is just found a really great way to prevent it, not to treat it absolutely if it develops. “Mammograms save lives” really is an incorrect statement, because a mammogram itself does not save lives. It is how the healthcare providers in the country respond to the outcome of that mammogram that saves lives. It is the prevention of the need for that mammogram in the first place, that saves lives. We need to stop trying to separate each individual test, vaccine and screening tool into its own separate island and look at these issues as the village that keeps the individual strong and thriving. It is not a popular theory, but a necessary one if we are really serious about raising the level of healthcare in the United States.
Tuesday, November 23, 2010
Komen has stepped up to comment on the TSA issues now....
See Komen's statement and recommendations for breast cancer survivors going through TSA security here:
http://ww5.komen.org/KomenNewsArticle.aspx?id=6442452866&terms=TSA+Guidelines
http://ww5.komen.org/KomenNewsArticle.aspx?id=6442452866&terms=TSA+Guidelines
Friday, November 19, 2010
Airport Security: The next big breast cancer "screening" debate
I travel a lot for breast cancer advocacy work. In the last year I have been through at least a dozen airports, on more flights and in or through more than 20 states. As a breast cancer survivor, I know there are many issues that don't merely disappear when our treatment and surgeries are finished. I would have never considered that the mere act of getting to the places where I can fight for good cancer research and best practices would in itself become such a reminder of my cancer fight and those of my fellow survivors.
It started a few months ago. I got a call from a dear survivor friend, for the sake of this post lets call her "Bonnie" (not her real name). She is one of the most intelligent and, "with-it" women I know. She travels often for her job and I have often consulted her about packing tips, travel help and general good sense that she always gifts me with. When she called she was half laughing and the absurdity of what had just happened to her and half crying at the gravity of her new reality. Unfortunately, when a survivor friend calls me upset, my mind often jumps to worries of recurrence or new complications. She assured me that this was not the case, but Bonnie (who has done such an awesome job of not letting her cancer past define her or drag her down in her ongoing pursuits), was now having her cancer past find her off-guard in one of the last places most people would expect. The middle of the airport. Her home airport had recently installed a full-body scanner. She wasn't much bothered by the intrusive scanner in terms of seeing through her clothes. She was used to TSA random checks, separating liquids, she always wore shoes she could get on and off quickly, she is a pro at this travel thing. In fact, she accurately describes this pattern as one of her "core competencies," which I would fully agree with.
This day was different, her flow was interrupted. After the full body scan, she was pulled aside for additional screening from an area of her body that was flagged by the scan. Low and behold her breast that had been reconstructed by some of her abdomen tissue years earlier was showing some abnormalities. She quickly learned that there were some permanent surgical clips left in place that had to be identified and screened closer. Now this professional woman in plain view of other business colleagues was being "felt-up" by a stranger. She was questioned, she provided explanation, but the poking continued. After forty-five minutes (and missing her flight) she was released. She inquired if this issue would continue to come up and was assured it probably would. She asked if she could bring a letter from her doctor or get a card from the TSA as a medical waiver in a preemptive move to prevent this humiliation in the future. She was told this wouldn't matter. She called me in tears that day, not even because she was embarrassed by what had happened (she would have had every right to be), but because she realized that she had just received an extra hour on all her trips now, that she would get an almost daily reminder of her missing breast and cancer past and that the whole game was changed now. Cancer takes so much, and now, 5 years later, it was taking again.
Since this call, I have talked to two other survivor friends who have been humiliated and stunned by their airport screening experiences. One woman, in a fit of frustration at continued problems with poking and screening, has begun pulling her breast prothesis out, putting it in its own bin and just letting in go through the conveyer belt with her shoes and coat. In one sense we giggle with a gesture of, "That'll show them." However, then there is a lingering sadness over the privacy lost. To a woman whose lost her breast, pulling out a prothesis can be tantamount to walking through the airport topless. Why do we have to be reminded of the pain of cancer at the airport of all places? This same woman said the first time this happened to her she was on the way to a long anticipated vacation with distant family and the shadow of this event made her self-conscious the whole rest of vacation and she dreaded the return flight and repeat of events.
I will be the first to admit my views on this airport screening have changed 180 degrees. I grew up in the Washington DC area. I was just a few miles from DC on September 11th and I, like many Americans, felt like the extra airport security was my patriotic duty to protect our country from terrorists. I looked at flying as a privilege and not a right. This has changed for me with the evolution of the new airport scanners and pat down guidelines. There are 3 million breast cancer survivors living in this country. There are many more people living with synthetic body devices from all kinds of issues. The TSA guidelines shown here:
http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1370.shtm#0
state very clearly that you are not supposed to be asked to remove any medical devices or even required to show the device, but all of my friends who have experienced this intrusive "pat-down" have indicated they were not made to, but felt encouraged to show these items. Also, unlike other airport screening waivers, a doctor's note does not in any way make anyone immune to more involved screening or humiliation. The guidelines also state that even though each individual has a right to request a private screening, there is no guarantee that flights will be held, connections made or accommodations to the actual details of travel adjusted for the extra time needed to move to another location, call in a understaffed supervisor and sort out any questions that have come up. These "private locations" are often some distance from the original screening area, understaffed and in many instances poorly maintained or dirty.
It was suggested to me that we should unite in protest by all insisting on pat-downs, holding up security or making our presence known. Yes, this idea sounds like a great idea to, "Stick it to the man!" but so difficult for people who have real life demands. What about the woman flying to see family she hasn't seen in years? What about the pennies she pinched to get the ticket, because cancer left her in massive debt, and the flight that she will miss (because the TSA doesn't really care if we are inconvenienced) is she supposed to sacrifice this trip to, "Stick it to the man?" What about the stage 4 woman who is flying to a major cancer center half way across the country in a desperate effort to find more treatments for her metastatic cancer, is she supposed to take extra hours of her life to, "Stick it to the man?"
Here is a glimpse of just one dialogue amongst cancer survivors on how this issue plays out: http://csn.cancer.org/node/204598
How is this not disturbing to ALL Americans??
http://www.msnbc.msn.com/id/40278427/ns/travel-news
I don't really know if it will make a difference, but we need to start by making our voice heard on this issue:
Here is a link to NBC News and their call for submissions on these types of issues: http://www.msnbc.msn.com/id/40197782/ns/nightly_news
Here is a link to the TSA complaint form:
https://contact.tsa.dhs.gov/DynaForm.aspx?FormID=10
How is this ok? Pat downs on children???
http://www.wbtv.com/global/story.asp?s=13526724
Something has to change, this should not be acceptable in the United States. How do YOU think we should resolve this issue??? Here is a great interview with the head of security for El-Al Israeli airlines and a great commentary on how to do this right:
http://edition.cnn.com/2010/OPINION/01/11/yeffet.air.security.israel/index.html
It started a few months ago. I got a call from a dear survivor friend, for the sake of this post lets call her "Bonnie" (not her real name). She is one of the most intelligent and, "with-it" women I know. She travels often for her job and I have often consulted her about packing tips, travel help and general good sense that she always gifts me with. When she called she was half laughing and the absurdity of what had just happened to her and half crying at the gravity of her new reality. Unfortunately, when a survivor friend calls me upset, my mind often jumps to worries of recurrence or new complications. She assured me that this was not the case, but Bonnie (who has done such an awesome job of not letting her cancer past define her or drag her down in her ongoing pursuits), was now having her cancer past find her off-guard in one of the last places most people would expect. The middle of the airport. Her home airport had recently installed a full-body scanner. She wasn't much bothered by the intrusive scanner in terms of seeing through her clothes. She was used to TSA random checks, separating liquids, she always wore shoes she could get on and off quickly, she is a pro at this travel thing. In fact, she accurately describes this pattern as one of her "core competencies," which I would fully agree with.
This day was different, her flow was interrupted. After the full body scan, she was pulled aside for additional screening from an area of her body that was flagged by the scan. Low and behold her breast that had been reconstructed by some of her abdomen tissue years earlier was showing some abnormalities. She quickly learned that there were some permanent surgical clips left in place that had to be identified and screened closer. Now this professional woman in plain view of other business colleagues was being "felt-up" by a stranger. She was questioned, she provided explanation, but the poking continued. After forty-five minutes (and missing her flight) she was released. She inquired if this issue would continue to come up and was assured it probably would. She asked if she could bring a letter from her doctor or get a card from the TSA as a medical waiver in a preemptive move to prevent this humiliation in the future. She was told this wouldn't matter. She called me in tears that day, not even because she was embarrassed by what had happened (she would have had every right to be), but because she realized that she had just received an extra hour on all her trips now, that she would get an almost daily reminder of her missing breast and cancer past and that the whole game was changed now. Cancer takes so much, and now, 5 years later, it was taking again.
Since this call, I have talked to two other survivor friends who have been humiliated and stunned by their airport screening experiences. One woman, in a fit of frustration at continued problems with poking and screening, has begun pulling her breast prothesis out, putting it in its own bin and just letting in go through the conveyer belt with her shoes and coat. In one sense we giggle with a gesture of, "That'll show them." However, then there is a lingering sadness over the privacy lost. To a woman whose lost her breast, pulling out a prothesis can be tantamount to walking through the airport topless. Why do we have to be reminded of the pain of cancer at the airport of all places? This same woman said the first time this happened to her she was on the way to a long anticipated vacation with distant family and the shadow of this event made her self-conscious the whole rest of vacation and she dreaded the return flight and repeat of events.
I will be the first to admit my views on this airport screening have changed 180 degrees. I grew up in the Washington DC area. I was just a few miles from DC on September 11th and I, like many Americans, felt like the extra airport security was my patriotic duty to protect our country from terrorists. I looked at flying as a privilege and not a right. This has changed for me with the evolution of the new airport scanners and pat down guidelines. There are 3 million breast cancer survivors living in this country. There are many more people living with synthetic body devices from all kinds of issues. The TSA guidelines shown here:
http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1370.shtm#0
state very clearly that you are not supposed to be asked to remove any medical devices or even required to show the device, but all of my friends who have experienced this intrusive "pat-down" have indicated they were not made to, but felt encouraged to show these items. Also, unlike other airport screening waivers, a doctor's note does not in any way make anyone immune to more involved screening or humiliation. The guidelines also state that even though each individual has a right to request a private screening, there is no guarantee that flights will be held, connections made or accommodations to the actual details of travel adjusted for the extra time needed to move to another location, call in a understaffed supervisor and sort out any questions that have come up. These "private locations" are often some distance from the original screening area, understaffed and in many instances poorly maintained or dirty.
It was suggested to me that we should unite in protest by all insisting on pat-downs, holding up security or making our presence known. Yes, this idea sounds like a great idea to, "Stick it to the man!" but so difficult for people who have real life demands. What about the woman flying to see family she hasn't seen in years? What about the pennies she pinched to get the ticket, because cancer left her in massive debt, and the flight that she will miss (because the TSA doesn't really care if we are inconvenienced) is she supposed to sacrifice this trip to, "Stick it to the man?" What about the stage 4 woman who is flying to a major cancer center half way across the country in a desperate effort to find more treatments for her metastatic cancer, is she supposed to take extra hours of her life to, "Stick it to the man?"
Here is a glimpse of just one dialogue amongst cancer survivors on how this issue plays out: http://csn.cancer.org/node/204598
How is this not disturbing to ALL Americans??
http://www.msnbc.msn.com/id/40278427/ns/travel-news
I don't really know if it will make a difference, but we need to start by making our voice heard on this issue:
Here is a link to NBC News and their call for submissions on these types of issues: http://www.msnbc.msn.com/id/40197782/ns/nightly_news
Here is a link to the TSA complaint form:
https://contact.tsa.dhs.gov/DynaForm.aspx?FormID=10
How is this ok? Pat downs on children???
http://www.wbtv.com/global/story.asp?s=13526724
Something has to change, this should not be acceptable in the United States. How do YOU think we should resolve this issue??? Here is a great interview with the head of security for El-Al Israeli airlines and a great commentary on how to do this right:
http://edition.cnn.com/2010/OPINION/01/11/yeffet.air.security.israel/index.html
Subscribe to:
Posts (Atom)