Town Hall Meeting: Resilience Across the Lifespan

Recorded June 2, 2002

Host		Speakers		Guests
Paul Berry		Dr. Julia Rowland Susan Scherr Pat Shifflett		Jennie Cook Doug Ulman Vernal Branch Dr. Ken Miller

Part One: Messages from Three Cancer Organizations

Paul Berry:
Hello everyone, and welcome to the Hilton Washington and Towers on National Cancer Survivor Day 2002. I'm Paul Berry, your host. As the opening event for a two-day Survivorship Conference, this evening's Town Hall Meeting, entitled "Resilience Across the Lifespan," will start an important dialog, we think, about what we can do better to promote optimal health for cancer survivors. This evening's Town Hall Meeting is co-sponsored by the American Cancer Society, the National Cancer Institute and the National Coalition of Cancer Survivorship, and is being broadcast live on the Internet through the American Cancer Society's Cancer Survivors Network. This broadcast is being recorded and will be posted on the ACS Web site tomorrow. This broadcast will become a permanent part of the Cancer Survivors Network, which houses the Internet's largest library of recorded discussions and personal stories of survivors and caregivers. And we all know how important it is when we hear other stories that give us a boost and help us out. So you will be able to go to that network from time to time at your leisure, and I promise you, you will be inspired. The entire library of discussions and stories is also available by phone, toll-free, at 1-877-333-HOPE. That's 1-877-333-4673.

Our Town Hall Meeting this evening is divided now into two parts. In the first hour we have three distinguished speakers from our sponsoring organizations. These organizations are dedicated to enhancing the length and quality of life for the estimated nine million cancer survivors in the United States alone. We will hear how they are working to advance the science, public policy, services and understanding of cancer survivorship issues. And of course, we will take your questions both here in Washington and around the world. If you have them, by all means, don't hesitate to let us know what's on your mind.

In our second hour I'll host a discussion with four special guests, all survivors and caregivers. Our topic is resilience, and we'll take your questions and comments. And as a caregiver myself, I am very pleased and honored to be your host, and hope that the discussions will inspire you both personally and professionally.

Now, to our speakers. I will introduce our speakers one at a time and they will then give their comments, and then you will have a chance to ask questions if you so desire, and then we will move to the next.

Julia Rowland, from the Office of Cancer Survivorship

Dr. Julia Rowland has been Director of the National Cancer Institute's Office of Cancer Survivorship (OCS) since 1999. Before that she was Director of the Psycho-Oncology Program at the Lombardi Cancer Center at Georgetown University. She trained and worked for 13 years in Psycho-Oncology at Memorial Sloan-Kettering Cancer Center in New York City. While there, she helped to develop, and was the first Director of their Post- Treatment Resource Program, an innovative center designed to provide a full range of nonmedical services to patients and their families after treatment. Dr. Rowland's research has focused on both pediatric and adult cancer survivors, and she has published extensively on women's reactions to breast cancer, as well as the role of coping, social support and developmental stages in a patient's adaptation to cancer. Dr. Rowland is active in championing both public awareness of and research addressing cancer survivorship issues. Please give a big round of applause for Dr. Julia Rowland.

[applause]

Dr. Rowland:
Thank you, Paul, for that really lovely introduction. And welcome, all of you this evening who are joining us on this Webcast to this evening's Town Hall, a first for all of us in the sponsoring organizations. My task over the next 10 minutes is going to be to tell you a little bit about the history and what we are doing at the Office of Cancer Survivorship. For those of you who are unaware of the existence of this particular entity, let me tell you that it was established in June of 1996 by the National Cancer Institute in recognition of the growing population of cancer survivors and their families and their unique and poorly understood needs. As Paul Berry has just told you, it is currently estimated that there are almost nine million cancer survivors in this country today, individuals living with a history of cancer. That turns out to be an estimated three out of every four families that will be touched by these illnesses that we call cancer. Many of you may already know that probably the key risk factor for developing cancer is becoming older. Almost 60 percent of our cancer survivors are 65 years and older. The good news is that cancer, for many, is becoming not a fatal illness, but rather an illness that can be, in increasing numbers, cured, and for many individuals, controlled over long periods of time. Cancer, for many, is now just considered a chronic illness. In the absence of other competing causes of death, 61 percent of individuals diagnosed today can expect to be alive at five years. And these figures are even higher for individuals diagnosed as children, where 75 percent will be alive in five years and ten year survival is pushing 70 percent. Some of us may sit in the audience and say these figures should be closer to 100%, but as I look around among those people who are in the room today, and I can imagine who has joined us on the Internet, many of us can remember a time when for children, cancer was a death sentence. The fact that we can now say for the most common of our childhood cancers, acute lymphocytic leukemia, that many of these individuals will be cured of their illness, is an enormous, enormous accomplishment. An impressive 14 percent of cancer survivors in the United States today were diagnosed over 20 years ago.

Let me tell you a little bit about the history of the Office of Cancer Survivorship. As I said before, we are celebrating, today, in June, the sixth anniversary of the establishment of this office. When it was originally established, we were fortunate to have Dr. Anna Meadows, a nationally recognized pediatric oncologist, step forward to become the acting Director of the Office. She herself was known for pioneering work, looking at the late effects of treatment among childhood cancer survivors. Under her leadership we have been able to grow and expand this program.

Let me share with you the definition that we use when we talk about cancer survivors. The definition that the Office embraces is that which was put forward by the National Coalition for Cancer Survivors back in 1987 and that is, an individual is considered a survivor from the moment of diagnosis and for the balance of that individual's life, whether or not he or she goes on to die of cancer or of some totally unrelated illness.

The specific mandate of the Office of Cancer Survivorship, however, is slightly different. Our reason for being, in many ways, was to look in particular at individuals who are living beyond their cancer treatments into that longer-term period where we had very, very little information. The office itself is an integral part of and sits within what's called the Office of the Director of the Division of Cancer Control and the Population Sciences at the National Cancer Institute. The Division of Cancer Control and the Population Sciences is what we refer to as one of our extramural divisions. That means it is focused in part, or actually principally, on developing the research portfolio that your tax dollars support, looking at trying to find cures for treatment and control of the diseases we call cancer. The mission of the office is to enhance the quality and length of survival of all persons diagnosed with cancer, and to minimize or stabilize adverse effects experienced during cancer survivorship. Toward that end, we support a growing research portfolio that addresses the long- and short-term physical, psychological, social and economic effects of cancer and its treatment among pediatric and adult survivors of cancer and their families.

To give you a sense of that growth, when the office was originally established in 1996, we took a look and found that there were about 24 grants across all of the institutes at the National Institutes of Health that addressed post-treatment health and quality of life outcomes for cancer survivors and/or their family members. In 2001--so some years after that--we now have identified a total of 142 grants. So from 24 to 142 grants in 2001. This has meant, obviously, a commensurate increase in the number of federal dollars supporting survivorship research, from approximately 6.6 million in 1996 to 38.1 million in 2001.

So what are we finding with your tax dollars? I think one of the important take-home messages, and it's probably the case if you ask anybody in this room, is the recognition that few of our current cancer treatments are benign. As many as a quarter of our childhood cancer survivors may not know what treatment they even received, and a small number may be unaware that they even had cancer. We certainly know that telling the diagnosis has become a much more [prevalent] phenomenon across this country, but when the diagnosis occurred in a very small individual, sometimes the parents feel it is in the best interests of that child not to tell them that they necessarily had cancer, which for them, is probably very beneficial. For long-term follow-up, however, it raises enormous challenges for us in trying to identify who may be at risk for some of the late effects of their treatment. If you don't know you had a disease, it's very hard to be followed for that illness.

We know that breast and lymphoma patients exposed to systemic chemotherapy may be at increased risk for problems with cognitive functioning. That effect that we refer to sometimes and survivors talk about as "chemo brain" is a very real phenomenon we are discovering, and we found that out because we've listened to survivors tell us, "What is this with our memory? I can't seem to attend to things. I can't stay on track with these things." What we're learning in our research is that this is a phenomenon that we need to look at more closely.

Between a quarter to a third of patients undergoing bone marrow or stem cell transplants tell us that they suffer from symptoms of post-traumatic stress disorder. Similar numbers of parents, especially the mothers of children treated for cancer, also experience some of these symptoms. While we have found that depression is not necessarily increased following cancer diagnosis, fatigue may be especially high among survivors and higher than those without a cancer history, particularly among those who experience pain.

This is just giving you a flavor of what some of our research has found. But on the same side here, we are also learning important things from survivors about the changes they are making in the wake of their cancer diagnosis. Many are adopting healthier lifestyles, eating better, making sure that they are getting all of those five-a-days, all those bananas and fruits that are out there, outside of this room. For those of you on the Web, sorry about that.

[laughter]

Staying leaner, decreasing sun, alcohol and tobacco exposure, getting regular physical exams and follow-ups, engaging in physical activity and paying attention to the stress and the spiritual sides in their lives. Among breast cancer survivors who stay in the workplace, their income and status is comparable to that of their peers, so worries about discrimination in the workplace may be less than we had previously worried about. And most survivors, when asked, tell us they have made important changes in the way they live their day-to-day lives, embracing valued social relationships, letting go of distressing parts and living more fully, more in the present.

What are some of the examples of the kinds of questions that our investigators are seeking to answer? Let me tell you what some of these include: What are the risk factors for second cancers among survivors? What's the prevalence of tobacco use among our pediatric cancer survivors? Is it the same as our adolescents now? Is it less? Do we need to worry about this? Does cancer exact long-term economic tolls on survivors and, importantly, their families, more and more of whom are being engaged in the care of treatments as we pushed care into the outpatient setting? What are the medical and psycho-social needs of our older adult survivors, who comprise the bulk of our survivorship population? Will participation in exercise and dietary programs prevent weight gain and adverse changes in body image among cancer survivors and potentially alter their risk for other non-cancer related health conditions like heart disease and osteoporosis? Can drug therapy or cognitive behavioral interventions reduce the problems I referred to before in memory and concentration among childhood brain tumor survivors or breast cancer patients treated with systemic chemotherapy? Along with this research mandate, the Office of Cancer Survivorship has two additional responsibilities. The first of these is to promote education of the next generation of clinicians and researchers committed to addressing survivorship needs. And the second is to disseminate the most up-to-date research findings to survivors, health care professionals, other cancer and advocacy organizations and, importantly, policy makers. And this meeting is designed to address both of these latter areas.

This afternoon, Doctors Diana Jeffrey and Dr. Ronit Elk from the American Cancer Society held a jam-packed training workshop for individuals interested in learning more about obtaining educational and research funding from the NCI and the ACS. Our activities on the educational outreach side have taken a number of directions, and I want to share two especially with you this evening. First, we are very excited to announce the development of a free, one-stop booklet as part of our new Facing Forward series for survivors and their families that we have called "Life After Cancer Treatment." This booklet was described--or developed, rather, to fill what many survivors told us was a void that occurred for them that happened as they finished treatment. While many survivors and their family members said that during active treatment they had lots of resources and information and educational pamphlets available to them, once the treatment stopped, they felt that they fell off the edge, as it were. They felt abandoned, not only by the health care team in some ways, but importantly by that communication area. What were they supposed to do about follow-up visits? What are the signs and symptoms that they needed to worry about? What changes did they need to make in their lives if they were going to keep this cancer from ever coming back again? What should they tell family and friends? How soon could I go back to the workplace? What do I face if I want to change my job? That's exactly the kind of information that we have put in this booklet to be used for patients as they are finishing their treatment, and to embrace as they get on with their lives.

For those of you who are on the Web and those of you this evening who can take a copy of it--but for those of you on the Web, if you want to obtain a copy of this new publication, which is also going to be disseminated by the American Cancer Society as well as the National Cancer Institute, you can call the 1-800-4-CANCER number, again, that's 1- 800-4-CANCER and ask about the Facing Forward series and in particular, the booklet, "Life After Cancer Treatment."

The second communication effort I wanted to highlight for you is our Web site. So for those of you who are already Web-linked here, you may be able to surf this right now, although you might not want to leave the program, but I am going to encourage you at some point to visit the Office of Cancer Survivorship's Web site. That can be located at www.survivorship.cancer.gov, that cool name. Survivorship.cancer.gov, I love that. On that site, you will find out not only more details about the program, but you will find our most current funding: where we are going with that, who's funded, who's not funded, what kinds of research we are looking for, prevalent figures about our survivor population across the country, describing some of the demographic characteristics of who is surviving cancer and where, and finding about more information for you and your family and those who care for and about you with regard to post-treatment.

I want to thank you now, for the opportunity to share with you my excitement and, importantly, the privilege that I have of leading this office and sharing this with you. I open now to this room and to our Web visitors the opportunity to ask any questions that you might have about the Office of Cancer Survivorship.

Paul:
Dr. Rowland, while we are getting questions, we talked about the fact that there are nine million survivors. Can you put into the context the number of people who are suffering? Do we have those statistics?

Dr. Rowland:
That's an excellent question, Paul, and actually [it shows] one of the limits of our current database. We derive many of these numbers out of what is called SEER registries, Surveillance Epidemiology and End Results. These are cancer registries that are maintained across the country. The limitation of that registry is that it can only tell us the individuals who carry a history. So we can't actually tell you who is cured of their disease, who is in active treatment, who is living with the side-effects or who may be dying of their disease. That is, in fact, one of the directions in which we are going to be trying to push our registry, to be able to be more specific about that place in the trajectory on which our survivors sit.

Paul:
Any other questions? Yes, Ma'am, please?

Audience Participant:
I think I heard you mention caregivers, and I wondered if your office is doing anything to support them.

Dr. Rowland:
Absolutely! Thank you very much. The question was, "What are we doing for caregivers?" Under our definition of cancer survivor, we include not only individuals who carry a history of cancer, but also those who are caregivers, family members of those individuals. We consider those individuals survivors as well, and our office, indeed, is championing research in that area, looking at caregiver burden, what impact it has taking care of someone who has this history on your own well-being, on the caregiver's well-being and health and surveillance and outcomes. Good question.

Paul:
A question up here, Ma'am?

Audience Participant continues:
So, you don't have any statistics on who has finished--how many people have finished treatment out of those nine million?

Dr. Rowland:
No. Good question. Remains to be answered.

Paul:
We have time for one more question for Dr. Rowland.

Audience Participant:
Hi. I have your pie chart that shows how you fund different research, and I see that three percent is for health behaviors, and I'm wondering why it's not more.

Dr. Rowland:
What our participant is asking is that on our Web site we actually provide information about the distribution of our grants by area of content. So, for example, how many are looking at psychological outcomes, how many are looking at physiological or functioning outcomes, how many are looking at economic outcomes, et cetera, how much of our dollars are spent on interventions and the like. The question was why so few of these studies are looking at health behaviors. I think that actually is an important question, because we're only just beginning to appreciate the fact that as people get on with their lives we need to be worried about their health. I think it's very interesting to see this research grow, that we're now saying people are going to be living, some of them lifetimes, with a history of cancer. That we can now invest in studies to look at the health behaviors of those individuals. I think you're going to see, over the next decade, interest in and growth of those research dollars. Thank you for that question.

Paul:
One more, here. Yes.

Audience Participant:
I'd like to know if you're doing any research on the after-effects of chemo as to not only "chemo brain," but what other characteristics and what other side-effects are continuing, even after someone is--no evidence of disease, when they get metastases and other cancers.

Dr. Rowland:
Right. We have a number of researchers who are looking at that, that sort of--some of the epidemiology of this; looking at people's exposure to different chemotherapy regimens to find out what may be the consequence of these treatments actually inducing second malignancies, and we do know for some of our cancers that is a very real risk. We certainly have seen that show up first in our long-term childhood cancer survivors who have developed second cancers as a function of their treatment. As a good example of that is some of our Hodgkin's disease survivors, where women treated for Hodgkin's disease we know are at increased risk for developing breast cancer. It is one of those trade-offs. As I started this comment, Terry, about what we're looking at, there are very few benign treatments and I suspect even when we get into molecularly target therapies, which is going to be the new generation, if you like, that we are still going to see some side effects and here, critically to our survivor community we are looking at that to say, a) what are those? And b) more importantly, can we keep those from developing or minimizing the negative effects?

Paul:
Let's give a hand to Dr. Rowland for a wonderful presentation.

[applause]

Paul:
Thank you so much, Dr. Rowland. I know we had some other questions. I saw your hands. Forgive me, but we just want to move along, but in the process of the two hours, we will get to your question. I'm sure we'll have a chance to hear from you. Dr. Julia Rowland, Director of the National Cancer Institute's Office of Cancer Survivorship, and we're better for your being there.

Pat Shifflett of the American Cancer Society

Our next speaker, Pat Shifflett, is the Director of Patient and Family Support at the American Cancer Society's National Home Office in Atlanta, Georgia. In this role, she works with cancer support programs like Reach to Recovery, the Cancer Survivors Network, Look Good Feel Better, I Can Cope and the "tlc" magalog [magazine/catalog]. Prior to her most recent assignment, she was the Director of Regional Planning and directed a virtual team of public health planning staff deployed throughout the United States. She has held a variety of positions with the American Cancer Society, including Vice President of Cancer Control in the Society's Southeast Division. Pat has additional experience in public health nursing at the state and local levels. She received her BS in Nursing at Westminster College and her MS in Community Health Nursing at the University of Utah. She is also a two-time cancer survivor and a caregiver. Please welcome, from the American Cancer Society, Pat Shifflett.

[applause]

Pat Shifflett:
Now, I have to be as exciting as Paul.

[laughter]

Pat Shifflett:
I wanted to tell you a little bit about the American Cancer Society. We're one of the oldest and largest voluntary health agencies in the U.S., with over two million Americans who give their time and their energy dedicated to conquering cancer through balanced programs of research, education, advocacy and service. We were started in 1913, before the public was even mentioning the word cancer. We have over 3,400 local units, a presence in almost every community in America.

What I wanted to highlight were, really, the three major areas we have always been interested in, in survivorship, which are research, advocacy and service. And research, we have invested over two billion dollars in research, which is the largest private investment in cancer research in the country. We've provided grant support to 32 Nobel Prize winners early in the careers, and we have made a real effort to provide research funds for people when they're just starting out, when they're making ground-breaking efforts, who go on then to make major leaps and bounds in the cancer arena. What we're really doing right now that is of interest, which you'll hear about over the next couple days at the meeting, is we have a nationwide prospective population-based study of cancer survivor needs and the quality, and we have both a prospective and a retrospective study. There is a number of interesting details coming out of that. So I think you'll be really interested to listen in on some of the presentations over the next couple days. We think there will be a lot of interesting information over the next decade coming out of those studies.

In advocacy, we invest in advocacy and public policy because, as you've heard, there's over eight or nine million survivors in America, and we know that the impact of government policy makers, their decisions, really impact the lives of cancer survivors, caregivers and others every day. So I wanted to mention that we were the first to formally recognize survivorship with the Survivor Bill of Rights published by the American Cancer Society, written by Natalie Davis Spingarn in 1988. We also have adopted the definition of survivorship that NCI has, at least within our patient and family support programs, in which we define a survivor as someone "from diagnosis through balance of life" and we also include caregivers in our survivorship activities. One of the things we are doing more recently around advocacy and survivorship is recently, we joined with many voices, and I know we have had some of our wonderful volunteers who are participating in the "One Voice Against Cancer" and we have really advocated in the last year or two for increased research dollars to go into cancer. So we have some record funding going to organizations, agencies such as NCI, including their Office of Survivorship, because of all those wonderful volunteer advocacy efforts.

But what do we do in the area of service? We have always been involved in service with the American Cancer Society. Research and advocacy are very important, but we also recognize that individuals face cancer and individuals come to us because we are in every community. Because we are a large organization, people come to us and expect support. We have had programs for many years. Many of you are familiar with Reach to Recovery, which is a peer-to-peer visitation program for women who are facing breast cancer. We also have an I Can Cope program, which is an educational series provided by health care professionals who volunteer their time to deliver a great educational program for people who are newly diagnosed. We more recently have embarked on commerce, sort of. It's really not a for-profit venture, but you may have heard we have a "tlc" catalog, a magalog of products for women who are experiencing side-effects of cancer treatment where, really pretty much at cost, we provide products such as head coverings, hats, breast prosthetics and other comfort items to women so that they can order these things within the privacy of their own home at a much reduced cost. Really, we are trying to provide that in a way that people can get it in the privacy and comfort of their own home. The women who receive the products through “tlc” primarily are breast cancer, but then about 40 percent of the women also have other types of cancer, primarily going though chemotherapy. It has been really very interesting watching that program grow and hearing all the wonderful stories from the women who are served. Also, it's an entryway into other kinds of programs within the American Cancer Society.

But what I really wanted to talk about, the program that we are the most interested in right now is the one that you're participating in which is Cancer Survivors Network. The American Cancer Society developed the Cancer Survivors Network as a telephone and Web-based service created by cancer survivors, family and friends to provide a national support system. The Cancer Survivors Network offers the following features, which if you join, you too can be a wonderful recipient of all these wonderful products. We are always growing the Cancer Survivors Network to have more services, but if you go on to the Cancer Survivors Network, you'll be able to read or listen to talk shows and discussions from cancer survivors and caregivers, this being one of them. This is a talk show which we will record. You can listen to it live if you are at home right now, or you can go tomorrow and hear yourself if you ask a question--you should be on the Cancer Survivors Network. You can also create your own personal Web pages to tell your own cancer story. You can contribute poems, pictures and stories to the Expression Gallery. You can connect with other survivors via e-mail, discussion forums and private chats, and you can contribute suggested books, articles, Web sites, support groups and other kinds of resources that you've found have helped you in your cancer experience. One of the things we think that's very unique about the Cancer Survivors Network is that there is a lot of places out there to get cancer information. You can get wonderful cancer information from NCI, from other organizations, even from the American Cancer Society through our 1-800-ACS-2345 number and cancer.org, which is our Web site. But what the Cancer Survivors Network does that is a unique twist on cancer information is it's really the experiential side of the cancer experience. It's how people connect to others in an online community, in a virtual world. You're not alone, no matter what type of cancer you have, no matter what gender you are, what age group, what race or ethnicity you come from, what cancer type you have, you can connect. If you're in Seattle you can talk to someone in Miami through your online experience. We really think it brings something unique. We are going to be growing the Cancer Survivors Network and providing more features including these live Webcasts. We do about one every other month right now, do a live Webcast, and we hope to take those to a much more frequent effort here soon. We hope that you'll join, because the way that you find out about our live Webcasts is joining, becoming a registered user and then signing up for our email newsletters that announce when these take place.

I really would encourage you to go on to the Cancer Survivors Network. Hopefully we have Americans out there right now listening to us, but you in the room, try it out. Go onto cancer.org, find the Cancer Survivors Network and register and become a user.

I do want to just take one final minute to say this is a very historic moment, where the three organizations, the NCI, the National Coalition for Cancer Survivorship and the American Cancer Society, have come together to host this Town Hall. I'm very proud to be a part of it, both as a health care professional as well as a survivor. I really appreciate everyone turning out on this beautiful Sunday night in D.C.

Paul:
I had the pleasure--while we're getting some questions, and raise your hands if you have [any questions]--I had the pleasure of visiting the Web site, which by the way, is very informed, well done. But you know I always have a little hesitance when somebody asks me to register. You know? I mean, I just wonder, what do you want to know and why do you want to know it?

[laughter]

Paul:
So tell us, talk to us a little bit about what registration really means here.

Pat Shifflett:
What registration does on the Cancer Survivors Network is pretty simple. We're asking you if you'll give us your email address and if you'll fill out some certain demographics, pretty much voluntarily, so we can know whether you're a man or a woman, how old you are, what you cancer type is. Primarily the reason we want to know that information is because we want to see who our users are and we want to also be able to make the site more useful to you. We're not collecting your home address, your telephone number or anything like that. We're really trying to get a sort of a demographic profile of the users on CSN so that then we can better identify who is using it, who's not and how do we reach them. For instance, we know that women are our primary users right now of Cancer Survivors Network. That's not unusual. That's to be expected. Women are also the primary users of support groups, and that's what Cancer Survivors Network is, a very large support network. We also know that breast cancer is our number one user group for cancer type, and so it really helps us to know looking at the cancer types, are we reaching the right people and then can we promote the Cancer Survivors Network to those groups who we're not? Some things it's more difficult for us to capture, such as race and ethnicity. We don't usually try to capture that at the moment. But that's the primary reason.

Paul:
Great. And so no reason--no fear. Yes? We have a question there.

Audience Participant:
Hi, how much does ACS spend annually on cancer survivorship research?

Pat Shifflett:
On cancer survivorship research, my goodness. I would have to hope that someone [laughs]--someone from the research department could tell us that.

Paul:
Is there someone here?

Ronit Elk:
I am very proud to announce that about three years ago the American Cancer Society has decided to balance our portfolio. In other words, until then, we had funded primarily basic science. We now fund psycho-social, behavioral, health services, health policy, and we hope to be able to fund it fifty-fifty. So, it's increasing by the millions every year and will continue to do so.

Pat Shifflett:
That's Ronit Elk from our research department. I do want to mention we also--our behavioral research department--we do have several studies of cancer survivorship going on. I mentioned the prospective study, and then we have a retrospective study as well. I am not certain how many millions of dollars we are investing in those studies, but those will go on for a number of years and we can get that information to you if you'd like. It's also on our Web site.

Paul:
Any other questions? Yes ma'am, right up front.

Audience Participant:
I have recently been diagnosed with stage I-B cervical cancer, which can be treated by either a hysterectomy or radiation, and I guess I have something to say about the choice between the two. Where would you recommend I look for detailed information on how to make an informed choice?

Pat Shifflett:
One of the things--there's a number of things the American Cancer Society has to offer. For basic cancer information, our 1-800-ACS-2345 number is a 24/7 hotline, meaning it's open 24 hours a day, seven days a week, and provides basic cancer information about cancer types, cancer diagnoses and treatment. Another level within the 1-800-ACS-2345 hotline is we do have a staff of nurses who can also help you interpret medical information, helping you with definitions, et cetera. We have a number of great publications, as well. Some are books, some are pamphlets. In the more recent book that I'm thinking of, that probably you would be interested in is, "Informed Decision Making," which is really about all the kinds of questions that people have as they're going through their cancer diagnosis. It's a very, very good reference book, and there are others. In addition, we refer people to other organizations such as NCI for additional information, especially if they're looking at things like clinical trials and other kinds of more--other kinds of treatment beyond the more typical ones.

Paul:
We have time for one more question. Yes, sir?

Audience Participant:
I'm a stage IV colorectal cancer survivor. We're spending a lot of time talking about research, and I think that really the answer for cancer is research. That's the cure. What are we doing, and what are you doing to promote involvement in clinical trials? Presently-- in the United States, at least--less than 5 percent of adults participate in clinical trials. So often, a patient will go to their doctor and begin the standard regimen, which may only work for 30 percent of the people who take it, and that disqualifies them from participation in many, many clinical trials. What are we doing to inform newly diagnosed patients that they need to think about clinical trials before they make a treatment choice?

Pat Shifflett:
I think that's an excellent question, because that's one of our challenges in helping people make informed decisions, in that a lot of the times, when they seek out organizations such as the American Cancer Society or NCI they've already gotten part-way into their diagnosis and into their treatment, making their treatment decisions. I think that's one of our challenges that you just mentioned, getting to people before they've made treatment choices. The second is really in how to figure out how to increase the number of people involved in clinical trials, and I'm actually going to ask Julia if she'd like to speak to that.

Dr. Rowland:
Thank you for the opportunity to also respond to that question. It's a very important question. As our participant has pointed out, only about three to five percent of adults diagnosed are actually participating in clinical trials. That's actually a very different figure than what we see in our pediatric arena, where it's between 70 and 80 percent. We're willing to put children on our trials before we put ourselves on, which is an interesting phenomenon nationally. But I think you need to know that there is a very large effort now and a lot of money being spent at the National Cancer Institute to push out clinical trials into the broader community. An enormous educational effort initiative is going right from the top, from the providers who need to know about what's going on at the National Cancer Institute, right down to the recipients of that care, the consumers, about what clinical trials mean, how do you access those, what are the questions you need to ask, what are the risks and benefits to participating in those? I think we should see again, within the next few years, a much bigger push for adults to participate and the availability, much broader availability of those clinical trials out into the community--very important, as you know, for changing the face of cancer survivorship.

Paul:
Thank you. I believe we will take your question, ma'am, and thank you for the question.

Wendy Klevan: Actually, it's not a question. I just wanted to offer some additional information regarding what the American Cancer Society is doing to promote participation in clinical trials. Very recently we signed an agreement with a company called Emerging Med, who maintains a very broad database around clinical trials, NCI-sponsored trials, also pharmaceutical-sponsored trials and individual or stand-alone trials. The real plus to Emerging Med's database is also its functionality and its ability and interactive capability to allow folks who are looking for information on trials to provide specific information about their own diagnoses and treatment, and help to refine the trials for which they would be most eligible or would be of most interest to them. Our relationship with Emerging Med entails that we'll be able to offer, the American Cancer Society will be able to offer this service via our Web site, www.cancer.org, and also via our national information center, so via our 800 number. That will not actually be functional until sometime later this year, but we have slowly begun and quietly begun to announce it--I think most recently at the Annual Society of Clinical Oncologies meeting a few weeks ago.

Paul:
And would you be kind enough to identify yourself to us?

Wendy Klevan: Sure. I'm Wendy Klevan with the American Cancer Society, in the communications staff.

Paul:
Thank you so much. And let's hear it for Pat Shifflett.

[applause]

Paul:
Thank you, Pat.

Paul:
Since we are gathered here in our nation's capital, it is interesting to note that in our own back yard, cancer incidence and mortality is high, and health disparities are evident in the population. Washington, D.C. has in fact the highest rate of new cancer cases in the country among males, and the district ranks sixth for female incidence. In 2001, D.C. ranked highest in cancer mortality among the 50 states. Right here. African American men in the district are twice as likely to die from prostate cancer than whites. What do we need to do to improve survivorship and quality of life? There are some things we are already doing for healthier lifestyles. According to the American Cancer Society's 2002 report, 29 percent of D.C. residents participated in 30 minutes of physical activity five times a week, and that's compared to the national mean average of 21.9 percent. So, they're doing better than the national average there. Screening activities for some cancers are also above the national median.

Susan Scherr of the National Coalition of Cancer Survivorship

Now, let me introduce our next speaker as we continue to investigate and question these disparities. Susan Scherr is Director of Program Development and Special Events for the National Coalition for Cancer Survivorship (NCCS)--the only patient-led organization advocating on behalf of survivors of all types of cancers. Ms. Scherr established the NCCS Washington office in 1990 and acts as liaison to other patient and professional organizations. She has testified before Congress, the Food and Drug Administration and the Institutes of Medicine on policy issues that affect cancer survivors' access to care and quality of life, and was the Kellogg Foundation Expert in Residence on cancer survivorship issues. Ms. Scherr joined the board of directors of the Ovarian Cancer National Alliance in January 2002. She has been re-appointed by Governor Parris Glendening to serve on the Maryland State Council on Cancer Control. She is a 24-plus year survivor of breast cancer and a 13-plus year survivor of uterine cancer. Ladies and gentlemen, our next speaker, Ms. Susan Scherr.

[applause]

Susan Scherr:
Thank you. It's an honor to be here and to see so many friends in the room. NCCS was founded 15 years ago, in part because of the reasons that Julia alluded to, or I should say, Dr. Rowland alluded to, because there was a gap. You were diagnosed, you were treated and then you were sort of left to deal with what we called survivorship. So, 15 years ago, 25 people got together in Albuquerque, New Mexico, and they formed an organization called the National Coalition for Cancer Survivorship. Natalie Davis Spingarn, who was mentioned earlier as writing the Bill of Rights, was actually a member of NCCS and was a co-chair, and unfortunately died a couple of years ago of the disease. One of the founding members is here in the audience--Susan Leigh, who coined the phrase, "Living with, through and beyond cancer." One of the goals of the organization when it was founded 15 years ago, and I'm going to read from the first newsletter, was the birth of NCCS. "The primary goal is to generate a national awareness of cancer survivorship." I would say we've done that, and tonight really indicates how successful we've been. From the charter- -I'm not going to bore you with all the bylaws and the preambles, but I just wanted to read these two items because they go back to 1986, 15 years ago: "To advocate the interests of cancer survivors, to secure their rights and combat prejudice, and to promote the study of the problems and potentials of survivorship". And I think that these are really important issues, because NCCS obviously has come a long way. Yesterday there was a full-day meeting at Children's National Medical Center on the long-term and late effects of childhood survivors who are now young adults, maybe not so young, but they're dealing with the real-life issues that so many of us are aware of; fertility, sterility. Do I marry? Do I tell? What do I deal with in terms of employment and insurance? These are a lot of the publications and information that NCCS has dealt with over the years. We have a booklet on your employment rights. We have a booklet on your insurance, what you need to know, even though it varies from state to state. To answer Ken's question, we have been advocating and working very closely with a lot of organizations collaboratively to get word out about clinical trials to people that are newly diagnosed, because that's when they really need to hear the news. We have recently, in fact today--it's very appropriate that its Cancer Survivor's Day--NCCS was one of the founders and was very involved for many years, and now there are communities throughout the country that not only do it on the first Sunday in June, but do it at any time during the course of the year. So, it is wonderful to see the changes over not too long a period of time.

We also have a Web site that is prize-winning. It was called cansearch.org. Today I'm very happy to indicate that we have changed the name. The Web site pretty much remains the same, and you can access it at cansearch or, if you look up any of our materials, you will find it there. But as of today, it's officially called canceradvocacy.org. One of the reasons for that name change is we could go out of business if we were only seeking to achieve the goals and the mission from 15 years ago. We have good educational materials. We've changed the definition. Survivorship is a word which everyone uses, which I'm very happy to see and to say. The definition has been changed, and both NCI and ACS have adopted NCCS's definition: "from the moment of diagnosis and the balance of life." But we have extended that and we are beginning to deal with not only caregivers, which we always have, and family members and professional caregivers. In addition, we realized that it's really important to deal with the reality of palliation as you're dealing with cancer treatment and beyond, and the long-term and late effects. We're working on a video project that will deal with this issue in 18- to 24-year-olds. We hope to extend that beyond.

When NCCS was founded, the idea was not to deal with treatment or research or control, because that was being done so well by other organizations. But from an advocacy standpoint, I just want to tell you a couple of things that NCCS has done. As Dr. Rowland mentioned, we started a series of Town Halls, which we've held across the country. We invited people to come in and tell us what they thought the issues were, whether they were newly diagnosed, whether they were the loved ones or the survivors of someone that had died, whether they were a professional caregiver, whether they were an oncologist or an oncology nurse, or a primary care physician. We wanted to hear from them. And that feedback informed the First National Congress on Cancer Survivorship. It's interesting to see the stepping stones over the years, because the Town Halls led up to the Congress, the Congress led up to a white paper, which became a document called "Imperatives for Quality Cancer Care," which was put on NCI's Web site. Coincidentally, there was a new director of the National Cancer Institute, who came to that meeting. His name was Dr. Rick Klausner. He read the white paper. He looked at that. He says, "We need to have an office to look at these issues." Hence, the founding, within that year, of the Office of Cancer Survivorship. NCCS convened the march on Washington in 1998: Coming Together to Conquer Cancer. A lot of you in the room may have been there. It was a collaboration of many thousands of people, many hundreds of organizations. It was really a wonderful movement, but we haven't stopped there.

We are working on issues--you mentioned clinical trials. It was only a couple of years ago, maybe not even two years ago fully, that we were able to get coverage for clinical trials under Medicare. Most insurance policies now cover them. We are working on issues of oral chemotherapy. You may not be aware of it, but if you are taking Gleevec™, this new wonder drug that we hear about, it is not covered, because unless there is an IV equivalent, there is no way that that will be covered under Medicare. We are trying to work very extensively with the Oncology Nursing Society, the American Society of Clinical Oncology, advocacy groups, patient rights groups, professional societies, the American Cancer Society, to all come together at the table to speak with one voice for all cancers, both sexes, all ages. I think we've come a really long way. This conference is indicative. I think Julia, or Dr. Rowland, sorry, [laughter] said that she has reached their full registration of over 300 people, which is really an exciting thing to see. Not only is there research going on, but there are empowered survivors throughout the country. But again, we don't want to forget the people that have died. We are starting to work with the Robert Wood Johnson and other organizations on end-of-life issues, so that if you don't survive the disease personally, and your family and your loved ones are surviving you, there is still recourse and you don't feel like you failed--and you don't have to deal with the negative psycho- social impact of the fact that you've done everything you can, you've gotten every treatment that you possibly can get, you've fought the valiant battle and you're still going to succumb to the disease. So even though our name is the National Coalition for Cancer Survivorship, we realize that end of life and death is something that we are all going to have to deal with.

One of the first things that we did was we had a Cancer Survivors Almanac. Now there's a Web [site] and people have a lot of access to information, but a lot of people still read or don't have access to either the Internet or to other forms of materials. This was reissued in 1996. The first issue came out in 1990. In the summer of 2003, we hope to issue the newest volume.

I just want to leave you with a funny want ad that was in one of NCCS's first newsletters, which interestingly enough was called "The Networker." This was in a magazine in New Mexico. "Sincere gentlemen with cancer in remission seeks female companion with same for weekly dinners and pleasant conversation."

[laughter]

Susan Scherr:
Thank you very much.

[applause]

Paul:
Thank you very much, Susan, for the expressions here and explaining not only the ongoing goal of the NCCS, but what people can do in terms of getting involved. Anybody have a question? Yes, ma'am?

Audience Participant:
I had breast cancer 12 years ago, and I decided to leave the workforce and go back to graduate school. I'm here today as a researcher and no longer as a survivor. I was unable to get private insurance, and when I called around to try and find health insurance, I was told that they would never insure me as a “private insured.”

Susan Scherr:
That is still a real problem. As I say, it varies from state to state. Some states are very enlightened. The state of Maryland, which I am fortunate enough to live and work in, is very progressive and mandates that coverage must be provided even if you're a single individual. But that's not the case all over the country, and so we all have to continue to work very hard, particularly in this era of managed care. Discrimination is not as rampant as it used to be, it is as obvious, but it is still very much present.

Paul:
Another question? We'll take your question and thank you very much.

Audience Participant:
Hi. I'm a five-year survivor, and I want to know about alternative health. What are you doing to mend the gap between alternative health and the medical health care professionals?

Susan Scherr:
Because we don't get into treatment, we don't deal with that specifically, but like the American Cancer Society, we will refer you. There is now an office at the Institutes of Health. In fact, Dr. Rowland, do you know the official name?

Dr. Rowland:
Yeah. There are two organizations within the National Institutes of Health [NIH]. There is the National Center for Complementary and Alternative Medicine up in NIH. And then within the National Cancer Institute itself, we have an Office of Cancer Complementary and Alternative Medicine that is specifically designed to look at the research and entice the alternative complementary medicine community to come in and evaluate many of the therapies that many individuals are actually taking advantage of right now, to see what impact they have and what role they may have in integrative care for individuals. So, these are very active parts of both the larger institutes of health as well as the Cancer Institute.

Susan Scherr:
But it's very important to get good information because actually being on an alternative or complementary therapy could affect the treatment that you are actually getting for your disease. It's really important to inform your physician and your medical team, and to get good basic science.

Dr. Rowland:
On that--just to interrupt Susan for a second--on that same vein, both the American Cancer Society and the National Cancer Institutes have information through their hotlines, their 1- 800 numbers and their Web site, about various therapies that are out there. So, certainly avail yourself of that information.

Audience Participant continues:
Well, I'm fortunate. I did find a medical team that was willing to work with--

Dr. Rowland:
Good.

Audience Participant continues:
--my alternative health groups. So they're working together to monitor me and I'm doing great.

Dr. Rowland:
Great.

Susan Scherr:
Great.

Paul:
Yes, ma'am. Go ahead, please.

Audience Participant:
I am surviving colon cancer. I am on a clinical trial, and my question to anybody up there is basically: you've educated us, who's going to educate the insurance companies and the HMOs about what our rights are? Example for me is in California, clinical trials are paid for. My insurance company didn't know that. I had to Xerox the law and send it to them.

[laughter]

Audience Participant continues:
And it took a lot of energy for me to actually get this whole process going. It took about six months. Who's going to educate them?

Susan Scherr:
We're doing our best. They don't really want to hear from us. So we just have to keep up the pressure. Sometimes it becomes a cause for people, but a lot of people are really too ill to put up a fight. So that's where caregivers, loved ones--very often we have people that call us, and they're very frustrated. They don't know what to do or how to help. Tell them that they can help you by researching, Xeroxing, lobbying, speaking, making telephone calls, because it's really important, and that way they really are helping you, and they are helping other people at the same time.

Paul:
We have one more? Should we take one more question? Yes, and then we take a break.

Audience Participant:
Yes, hi. It's a comment to Julia and then there's a question. My comment and compliment to Julia, as Julia and I go back a long ways, and I really commend the office for finally doing a caretakers guide, because it was very crucial, crucial in my life. I'm a 26-year, four-time cancer survivor. One of the questions I have to all of you up there is on your stats: are they broken down by ethnicity, amount of years of survivorship? And how many recurrences these survivors have had.

Dr. Rowland:
Thank you for your lovely compliment. You're a sweetheart. And I join all of my colleagues up here in saying that one of the wonderful things about Town Halls is that you get to see people who are dear and familiar to you, and it's a wonderful event. I'm glad that we are doing these again. In response to your question about the statistics, what you will find actually--it's not up on our Web site right now because we have--just in this past week, the National Cancer Institute released the new cancer figures. One of the things that's very exciting about these new figures is that they are taking advantage of the database that I referred to earlier, the SEER database, to give us national statistics. What that will mean is that we can begin to look at our ethnic minorities, because in the past, we had to use just the Connecticut Tumor Registry, because that was the longest registry in the United States. It went back over 50 years. So that's what they used to look at when they talked about cancer prevalence, in other words the number of survivors in the country. Now we can use the full SEER database, so we'll be able to tell you how many African Americans, how many Hispanic, Latina, Latino individuals are surviving, Asian, white, black, et cetera. But, we still have some constraints on there, because these registries don't go back with that information more than about 10 years, so we're going to be seeing that grow over time. We have some limits, but for the first time, we will actually be able to tell you more. And with that, we are beginning to lean on our colleagues in the surveillance program to be able to tell us how many individuals are living with recurrent disease or, as we know in this audience alone, how many are living with multiple recurrences, because those numbers are probably pretty impressive.

Paul:
Ladies and gentleman, would you join me in thanking Susan Scherr and our other two speakers for their great insights and information.

[applause]

Part Two: Survivor and Caregiver Discussion

Listen With (02 minutes 54 seconds)

Printable Version Bookmark Number: 1006

Paul Berry:
Welcome now to our second hour. Did you enjoy the first hour?

[applause]

Paul:
Yes, I thought so. Very informative. Exactly what it ought to be in terms of information and, as Julia made point and reference to, what a great time to interact, to see old friends and have a chance to say hello and to, in this case, broaden our horizons. Thanks to the technology as we talk to you across this great country of ours and of course, the Web, I guess we're all over. Wherever the Web is, you can participate. Cancer knows no boundaries. That, we can be sure. Ladies and gentlemen, in this second half, this second hour of the Town Hall Meeting, Cancer Survivorship: Resilience Across the Lifespan, if you will--for those who may have just joined us, our Cancer Survivors Network live Internet broadcast, I'm Paul Berry, your host for this particular effort. We are celebrating National Cancer Survivors Day here in Washington, D.C. at the historic Hilton Washington Hotel and Towers.

Now this hour, we will have an in-depth discussion with four survivors and caregivers, all prominent and active in giving back to others as a reflection of their own personal resilience and dedication to the wellness of survivors and caregivers. In the first hour, I noted that I too am a caregiver. I don't stand here as an outsider. I am very closely involved in the business of caregiving, and I am still doing that. As someone who has lived through the cancer experience with my wife, who is listening from Easton this evening, I am especially pleased to moderate the discussion. It is a way for me to do much of what I could not do when I was involved. And when I say involved, there was no--no one told me what to do. They looked after my wife when she was diagnosed, and they were doing everything that they could do. And I was standing there and there was no pathway, if you will, to caregiving, to explaining what should I do. What role should I play? When should I coddle her? When should I push her? What was I supposed--what was my role? I didn't know. And so I'm so delighted to have this kind of opportunity to give back and share these experiences, and that's what we're going to do right now. We're going to talk about issues like: the ability to ask for help, turning problems into challenges, keeping the whole family focused on wellness, drawing strength from our cancer experiences, facing our fears, and building a dialogue with health professionals.

[Editor's Note: Due to audio technical difficulties, a few minutes of the audio are missing here. This transcript provides the guest introductions, after which the audio continues.]

Striving for Hope: Turning Problems into Challenges

[Editor’s Note: The audio program and written transcript continues with our host, Mr. Paul Berry.]

Paul:
Vernal, this happened to you and you weren't prepared in any way?

Vernal:
No, I wasn't. But you know, I knew that if I was going to get through this, I was going to have to take the focus off of myself. I started looking at my sons, and I thought--I said, I really want to be there for when--

Paul:
Right.

Vernal:
--the day that they get married and have children of their own. I was not going to take this lying down. I was going to get all the information. I went out there, and I started looking at all the different options. I decided--I had seen a man on the beach. He was a homeless person, and he had lost both of his legs in Vietnam. When trying to make that decision of doing a lumpectomy, of removing my breasts, because at that particular time, they had said that I had about a 75 percent chance of survival of five years if I did the lumpectomy and radiation, and I had a 98 percent survival rate of five years if I removed my breast. Well, after seeing this man with both legs removed--who had lost both of his legs, I thought, I said, "Well, I've nursed three kids." I said, "I don't have no longer--"

Paul:
Don't need them anymore!

Vernal:
Nope! No longer use of this breast. Take it off!

[laughter]

Paul:
But you had to--

Vernal:
I just put it in perspective and--

Paul:
Right.

Vernal:
I thought "You know, I really don't need this any longer."

Doug:
And my friend here is being very modest because she hasn't told you that one of her sons now plays in the NFL and is married, and her other son plays football at Stanford, and she goes to every single game.

[laughter, applause]

Vernal:
And I wanted to get back to those football games!

Paul:
Right on the money, because what you said is a reason to live, a reason to continue. I want to see my son. That's one of the ways you can challenge this--

Jennie:
Right.

Paul:
--into a positive.

Jennie:
And you know what? The interesting part about that is he is 39 years old now. He's going to be 40. He's married, but at the age of 18, he had a spinal cord injury playing rugby for U.C. Davis. He's in wheelchair. He's been in a wheelchair since he was 18, and he married a blind girl. So I don't have any problems, because they have no problems. They are completely independent, both of them, and it's been worthwhile to live to see the two of them together.

Paul:
Hmm!

Jennie:
Absolutely! And he's a schoolteacher.

Paul:
Is he? Wow. Fabulous. Fabulous. Ken, some of the things that I suspect that you've learned--I mean, you go through med school, you do it, you have your practice--but there are things that as I said, I thought I had my head on straight, but there are things that I learned as a result of being a caregiver. I suspect you must have learned some things that made a difference in terms of your patient care and your daily behavior.

Ken:
You know one--it was a small thing in a sense, but I realized for myself as a caregiver, it is lonely. I actually really make an attempt now to say--to talk to my patient or the person that I'm seeing, but also to look at the spouse and say, "How are YOU doing? How are you doing with this?"

Paul:
Hmm.

Ken:
Because I remember when people would turn to me, and people would say, "How are you doing?" and that was very, very helpful for me. I think also with children, the doctors that Joan had were pretty good at incorporating our children into what was happening with their mom. It's very traumatic for kids to go through that. It also builds resiliency and coping skills. But I think I really try to, as best I can now, to talk to the person's children and answer questions, and try to help them form some questions to ask. The other thing, you know--I'll just add a couple things that I think are important, too. It's a reminder to me--and things looked pretty bleak when Joan was first diagnosed--that hope is free. And that it's very important with each prescription that we give, whether it be medication or surgery or radiation, to have a little dosage of hope there.

Paul:
Yes, because that's just so important. Hope is free. I mean, you can draw on it, but the question is, can you see clearly enough at this time and especially if you've not had any, as a caregiver? Again, there was no road map. Nobody walked up to me and said, "Here are the things that you need to be doing. Here's how you feel right now." And the attention was turned to where it was supposed to be, but I needed some attention. I needed some help. I needed someone, you know--I can tell you, there were days where I would get home and close the door and just sit there and sob, because I just didn't know what to do next.

Vernal:
My husband told me he took a month's leave of absence from his job and he was doing everything, carpooling the boys that were still at home to where they had to go, cooking, cleaning, doing laundry, and at the end of the four weeks he said, "Hey, I've got to go back to work." He said, "I need some rest."

[laughter]

Paul:
We have a question here, and then the gentleman here, or lady here, I'm sorry. Yes, go ahead.

Audience Participant:
Yes, I have a question along these lines. What have we done to educate the medical profession about the needs of the caregiver? I would go and sit there in the examining room. The doctors would come in and ignore me and focus entirely on the physical medical conditions and not deal at all with the needs for support and all that. Even though they have a social worker down the hall, they never mentioned it. So I had to go out of my way to find any kind of support. Also looking for caregiver support groups, I got on the Internet and found a whole bunch of them, and none of them were going, none of them were active. I have never yet found a caregivers' support group.

Paul:
Jennie, Doug, Vernal, Ken? What about that?

Vernal:
I think my husband, he truly needed someone to talk to, and he really did not have anyone. That was one of the problems that we faced, that my children, my boys didn't have anyone that they could really talk to. That’s where one of my friends came in, and she was able to talk to my husband and to one of my sons who was having a hard time dealing with this, and so they got some support that way. But there was really no information that I could access for them at that particular time, and yes, there does need to be something for the caregivers.

Paul:
Julia Rowland, let me just ask you. I know you're kind of relaxing there--

[laughter]

Dr. Rowland:
Mm-hmm.

Paul:
--and not really expecting, but how are we doing? Because as caregivers, you know, we want to stay positive, but we need support. Are those networks building now in your estimation?

Dr. Rowland:
I think absolutely. People are beginning to recognize that caregivers are very important, key people often, to recovery for individuals who are diagnosed with cancer and who are living with cancer and beyond cancer. I think the literature actually is quite compelling. If there is one thing that we show consistently is social support makes a difference in outcome.

Jennie:
Absolutely.

Dr. Rowland:
Whether you have cancer or heart disease or stroke or whatever it is, social support is an enormous buffer to health outcomes. So the research community already knows this. What we are beginning to do, though, is to grow the research on late outcomes for individuals who have been caring with someone with a cancer history. In the Facing Forward series that I talked about a little bit earlier in this program, one of the books that we're working on now is going to be for family members specifically. What's my role? How do I deal with this? What's the outcome for me? How do I take care of myself?

Paul:
Dr. Julia Rowland, Director of the National Cancer Institute's Office of Cancer Survivorship. We have a question from this lady please.

Enhancing Survivorship with Physical Activity

Audience Participant:
Yes. Doug, I was particularly interested in the fact that you mentioned you were running marathons. I do research in the area of physical activity and cancer survivorship. So I have a question to everyone on the panel, if you could just speak a little bit about how physical activity in particular maybe enhanced your survival process, especially the psychological and sociological aspects of your survival.

Paul:
Please.

Doug:
Well, I can tell you I was an athlete growing up, and prior to having cancer--which I think was a huge benefit to me personally--but now running marathons I see that there's a difference in the athletic kind of participation for myself, and that is that marathons are pretty much an individual thing. I was actually asked in 1999 by an organization if I wanted to go over to India to run a hundred-mile marathon in the Himalayas.

And I always tell people that prior to having had cancer I would have hung up the phone and said, "You're crazy!" But I jumped at the opportunity, and I think that it provided a goal, and it provided a sense of accomplishment and a sense of normalcy. When I ran across that hundred-mile finish line, cancer was the last thing on my mind, and I felt like I was back to life. So I think that physical activity plays an enormously important role. Also working at the Lance Armstrong Foundation, we are called daily by people who say, "What do I do? Do I run the treadmill? Do I play soccer? Do I do a marathon? Do I walk? What do I do?" And we don't know yet exactly what to tell them. So I think that the work that you're doing is very important.

Vernal:
I was also pretty athletic. I played a lot of tennis and a little golf, and I also coached my sons in soccer and baseball when they were younger. So it was important for me to get back to the routine that I was in before, and I did that. It was a slow process, but I gave myself a time schedule, and I got back to the things that I was doing before. I think that that helped me to get back in shape and to heal physically and mentally because of that.

Ken:
I would add to that the diagnosis of cancer--one of the feelings that people share is that they feel like the control was taken away. Something happened that you really didn't expect, and exercise, diet, a lot of the complementary things that people do is a way really to re-establish control and to feel very good about yourself and to get back into good health.

Paul:
Getting control of your life again. Just a moment. We'll get right to you. Yes, ma'am. The lady in the back, please?

Audience Participant:
Quick comment and a question. The comment is that as much as we're hearing about people who survived cancer have changed, have made positive changes in their lives, have gotten into things they would have never found themselves doing before--well, at Adelphia University, I don't know if people know about it. In New York, not only is there a lot of clinical support for the partner, for example, women with breast cancer, but we are also doing research on the changes that people make in their lives following breast cancer, and we're finding that caregivers, similar to survivors, also benefit from some of the struggles and the trauma of having been through the cancer experience. So, that's one. And the question to the oncologist is yes, hope is free, but what do you do as a medical professional who needs to practice defensively so that you're not later questioned as to whether you have given the appropriate chance of survival?

Ken:
That's a good question. I have to tell you, on a day-to-day basis, the practicing defensively is not an issue that I think about a lot. I mean, it's really a matter of--we're struggling, and it's a very, very hard disease, and sometimes with an outcome that I would predict is going to be good and sometimes that is not--I mean, it's really not an issue that I think about day- to-day. I really worry about the individual relationship and the patient that I have, and not whether I'm going to be sued for malpractice later.

Paul:
Gentleman here, please, yes, in the front of the room. Yes, sir?

Audience Participant:
It's a very similar question I have. It has to do with doctors, most doctors that we deal with. We, I think most of us, most of our survivors, when we begin to talk, we talk about not feeling supported by the doctor emotionally and even when there is a lot of reason for hope, they are very stingy with respect to giving it, and yet it's so important to us. You know, even after 10, 20 years, every time you go there, it's so important. A warm smile, even giving us some possible statistics that might just make us--make our day and give us more hope. It appears to be absent, and I think it's as important as the science. Can you give me some insight as to why this is the case, and is there anything being done of a substantial nature to change this condition?

Ken:
As a caregiver myself, I absolutely echoed that. I'm sure a lot of us here would. Let me look at it from a different point of view. The advice I would give people is to bring yourself to the appointment, too. A lot of times people bring a list of questions, and that's valuable, and people should bring a written-down list of all the questions. But also bring a little bit of you. Tell a little story. "Geez I gotta' share with you, Doctor, my daughter just had a baby," or you know, "I just got a new job." There is always some way to relate to your doctor so that I can relate to you, because we're all people. We're really all pretty much the same. I think that humor definitely has a role in that, too. So I think it's important to establish a connection on a very personal basis, and most people are able to do that.

Paul:
--to do that, yeah, I think that's a very important point. And in this case we see you in both roles, obviously. I found that my doctor was very busy. It wasn't that he ignored me or didn't give these things to me. He just didn't--there was another patient and someone else. And then the emotional involvement, he didn't want to participate because he had to stay detached to some degree. So as you say, I did exactly as you said. I made it fun.

[laughter]

Paul:
I tell you, I'd have him rolling! He was, you know--he'd be laughing and I'd say, "Well, what about your next patient?" And he'd say, "He'll wait. He'll wait."

[laughter]

Paul:
And we'd talk! You know, pretty soon we established a better rapport. And so he would say, "Now Paul, so-and-so and so-and-so." It was because, as you say, I brought Paul to the room. I had my questions, but he's a human being. You know, they're human beings. Right here with several questions. Yes, go ahead.

Audience Participant:
Hi. I have a similar experience as Mr. Ullman. I was actually in college, and I was playing for the NCAA championship, and my mother had been just diagnosed with breast cancer. So she went to have treatment at Dana Farber in Boston. I was starting to experience some stomach pains, and I just kept ignoring them. Eventually I got it checked out, and I had apparently an eight-centimeter tumor on my left ovary, and I had just finished running the Boston Marathon. I didn't know. I mean, I guess I tried not to show the pain or something, I don't know. What happened to me was that I was sent immediately to an oncologist, and they were preparing me for the cancer diagnosis without actually saying I had cancer. So I asked the oncologist, "Do I have cancer?" "Well, I don't know. I have to go in and check." So they went in for surgery, came back out, took out my left ovary and said, "It was benign." Well, what--OK, fine. So then I had to go through the whole process of should I do the BRCA-1, BRCA-2 gene testing, should I get mammograms before 30? I know there's a family history of that, breast and ovarian, and I had nowhere to go. I have no--there was just no--

Paul:
Have you found--where are you in this process now? Are you--?

Audience Participant continues:
Right now I work for the American Institute for Cancer Research just trying to find out more information.

Paul:
Mm-hmm.

Audience Participant continues:
But I've gone to many doctors and many oncologists in many groups, and it's just on an individual basis. And they say, "Well, we don't know enough about the gene therapy. We just don't know."

Paul:
But you are turning that negative into--I mean you're making things happen through your efforts now.

Audience Participant continues:
I'm trying.

Paul:
Yes, you are. No, that's not just trying. You're doing it. Let's give her a round of applause. That's what it's about.

[applause]

Paul:
That's exactly what we're talking about. You have a question there. Yes, please?

Susan Leigh:
Yes, I've got two comments and a question. I'm Susan Leigh, a 30-year survivor. I've been with NCCS since we started, and I just keep thinking there are so many organizations who have such wonderful materials. Not just NCCS, not just ACS, not just NCI--and if there was a way that we could have all of this in one place, just as we have all the clinical trials information in one place. We have been hearing about what is there for the caregiver. We have a wonderful audio tape on "Caring for the Caregiver" at NCCS. It's a part of our cancer survivor’s toolbox. When we talk about hope, one thing that we have been challenged with is this whole idea of hope. One of our past presidents, Betsy Clark, wrote this wonderful booklet, "You Have the Right to Be Hopeful." I think what some of us find as we are in our doctor's office is that if our doctor can't give us hope that we're going to be cured, then there is no hope. And what she is saying, and what so many of the social workers are saying, is that we've got to transform that hope into some way to get through the next day and be realistic about what kind of hope we have. So I think that hope is a wonderful topic to discuss. But then there's one question that I have, and this is to the researchers. We're hearing about these wonderful athletes that we've got on our panel here. Not everyone can safely do that, and if you have massive irradiation therapy to the chest, and you've got the potential for cardiac disease, for pulmonary problems, if you've had bleomycin that can damage your lungs, if you've had Adriamycin that can be cardio- toxic, what is safe exercise? For those of us who are survivors, depending upon what disease we've had and what therapy we've had and what co-morbid diseases we've had. It's not just that we can all go out and run marathons.

Paul:
I don't think that's the point here.

Susan Leigh:
I know that.

Paul:
The point is not to suggest that we can. Nor do we have the researchers that can answer you directly here.

Susan Leigh:
No. Right.

Paul:
But you raised the point. You raise a valid point. Doug is not suggesting that everybody go do--how many miles did you do?

[laughter]

Paul:
A hundred miles. And nobody can do that.

Susan Leigh:
It's tempting.

Paul:
I'd love to.

Susan Leigh:
We like to know that everybody can't do it.

Now Go Live Your Life: Never Lose Hope

Paul:
I think that's part of the hope, too. Absolutely. I think more than anything else, we realize-- and certainly those who are diagnosed realize--that they can't. But the question is, for those who can, they should know that it's OK. As you say, researchers and doctors, this does not stand in the way of good advice and following your physician and following those who are treating you, but it does suggest this evening that there are pathways that take us from where we are to where we want to be. And I think Doug certainly--

Doug:
I just want to add one thing on the topic of hope. This may be a little bit simplistic, but Lance Armstrong is obviously seen as this icon of hope for millions of people with cancer, and he talks frequently. I've talked to him about this and said to him, "Where did you get your hope from?" And he used to daily ask his doctors at Indiana University, "What are my chances?" And his doctor would look back at him and say, "I like your chances." He didn't tell him that he had a 25 percent chance. He didn't tell him that he had a 15 or 20 or 30 or 40 percent. He said, "I like your chances." And Lance said that's all he had to hear. If this oncologist tells me he likes my chances, then I'm good. And so it sounds rather simple, but--

Jennie:
Just to go back, my oncologist, after I had my surgery, he came into my room and he said, "I'm sure we got it all." He looked me straight in the eye and he said, "Now you've had cancer. Now forget about it, and go live your life." That was my hope.

Paul:
Yes, ma'am.

Patricia:
Well, I'd like to comment on the earlier point. I think the point that Doug and Vernal were trying to make was that perhaps you don't have to be an athlete, but to get involved in a project--

Paul:
Yes.

Patricia:
--whether it's a professional project, a family project, a volunteering project, gardening project, writing a journal. Find yourself something that really takes a hold of you and grabs you and takes your mind off the cancer process. For those who cannot do heavy athletics, stretching is always good. My name is Patricia. I'm a two-time cancer survivor going through the third bout right now.

Paul:
For a lack of a better term and I'll invite the panel to think if you've had this. I ran into the "patient mentality factor' with my wife. That is, after she was finished, after she had determined--and it took a while, 10 years--that she was not going to have a diagnosis of cancer of some sort, there was a concern. She had a patient mentality. What I mean is, I had to say, "You're not a patient now! You can come back into the real world, and you can do things, and you can participate, but don't think of yourself as a patient!" Now, does anybody--?

Ken:
I was standing in Joan's room one day, and I heard them making rounds--and these were again my colleagues--and one of the doctors saying, "Well, the patient in room 263 is a 41- year-old acute leuk!"

Audience:
Oh!

Ken:
The patient with--they're meaning the patient with acute leukemia. I felt like knocking on the door and saying, "No, no, no, no, no! You've got that wrong. You've got that wrong. This is a 41-year-old woman who has three children, is an author and a wife and a daughter." So people are not their diagnosis. I think as a husband, I worry too. I worry, what's going to happen tomorrow, what's going to happen next year. But it is “people are people” and it is helpful to sort of put away the diagnosis--

Paul:
Right, and just be the person. Yes, ma'am. You've had your hand up, please?

Cindy:
I'd like to address the lifestyle changes that took place. We've talked about exercise, but we haven't talked about how you change the way you look at food and nutrition, and maybe how you cleaned up your diet. I'm Cindy. I'm a registered dietician at George Washington, and I'm a 22-year colon cancer survivor. When I had surgery, I asked my oncologist, "So, Doctor, what should I eat? You know, do you recommend high fiber? What do you recommend?" He was clueless! He had no idea. Not only that, but he made no recommendation. Well, why don't you talk to another dietician or make referrals? I would like to know, did any of your physicians make a referral--

Jennie:
Yes.

Cindy:
--to go see a dietician? What resources did you find helpful? We know a lot about how diet can prevent cancer. We know connections there. Not so much is known about diet and cancer survivorship. That's an area of nutrition research I'd like to participate in. So I'd like to hear from you.

Paul:
Jennie?

Jennie:
Again, I had a wonderful doctor. Even though it was 38 years ago, and we didn't have the research that we have today about how diet affects cancer, he sent me to a nutritionist. He said, "You need to now go to a nutritionist. You need to quit smoking," which I did, and, "You need to go to a nutritionist." And I have stayed with that thought all these years, and periodically I will go back to the nutritionist to change my diet as my life changed. So, yes. I was fortunate. I had someone that took charge of that for me. The other thing I'd like to say is I had a two-and-a-half-year-old. I didn't need to exercise.

[laughter]

Jennie:
All I needed to do was follow him around.

Paul:
Vernal?

Vernal:
I had had a home-based business. I had had a catering business when my children were small, and because I had athletes in my family, I was really conscious, and I had been working with a nutritionist also. My oncologist did refer me to a nutritionist, but because a lot of things in my house center around food, with three boys, you can be well-aware that I did a lot of cooking.

[laughter]

Vernal:
So, with athletes, my sons don't drink sodas. They don't eat ice cream, dairy products, when they're in training. So there were a lot of things that, you know, I didn't really have to change in my life because I was already doing them before I got cancer, which was good for me, because I like to eat.

[laughter]

Vernal:
And I like to eat well. But, you know, there were a lot of things. I did add more fruits and vegetables to my diet. I have been working with a nutritionist because I wanted to lose some weight, and my doctor had put me on this pretty strict diet. Then I came down with cancer. So that was really interesting. I say, here I am doing all these healthy things. I'm exercising, and then I still get cancer. But now I know a lot more about how cancer is a slow disease. It takes many years for you to get cancer, so it just didn't happen overnight.

Paul:
We have just a few minutes left, and we'll take just a couple more questions. Who's next? The gentleman here?

Audience Participant:
Some on the panel have talked about hope, and I'll try to briefly share a little bit of my story, because it maybe makes a point. I had a professor who once said, "That which is most personal is that which is most universal." So, from my personal story maybe it will illuminate some of these. I had an oncologist come to me about a day after my surgery in the hospital, and I kind of grilled him because I wanted to know, what's the story here? My surgeon before the operation had said, "Oh, we must be getting this early," because I was colorectal cancer and I was 38. Well I was stage IV, and when I woke up, they [had] actually done a liver resection. The first oncologist that I spoke with flat-out told me I had no chance to live. None. What about experimental treatments? There are none that worked, he said. I said, "Don't any survive? You know, I'm young and healthy," and all this, and he said, "That won't matter." You know, I was pushing. I wanted the answer, but--

Paul:
And he gave you one.

Audience Participant continues:
This was the answer he gave me. Finally he said that there was nothing, there was no treatment; there was nothing that I could do. And I can tell you that I was devastated. I was wiped out. My wife was wiped out. But I just decided not to accept that, and I found another oncologist, actually out of the yellow pages, who said that he has experimental and traditional--standard treatment, and so he has a lot of clinical trials through his practice and through research that in fact there is hope. I actually am in a group of people who received the exact treatment that I have. About 25 percent lived. Not zero! Not zero! There is a lot of oncologists who are very pessimistic, particularly when it comes to advanced cancer, for my little, you know, neck of the wood colorectal cancer that's stage IV. We have about four or five percent survival and everybody else dies. We need something more than just, “Well, sorry.”

Paul:
No, no, it's--

Audience Participant continues:
We need oncologists who are willing to fight for us. We need oncologists who are willing to say, "You know, it's real grim. But there are things that we can do and we can try. And even if it doesn't cure you, it could help you. You could live longer," and so forth. So I think in a certain sense we talk about hope--we need to make a seen change about that, and I think that doctors need to find ways to give their patients hope.

[applause]

Paul:
Thank you very much for your comment. Let me just suggest to you, we certainly have a doctor here tonight, an oncologist, who is willing to give us hope, and we thank you very much for that, for being here and for sharing your story. You didn't have to--you know, this is exceptional. Come on! You know, how many other doctors are on this panel?

[applause]

Paul:
It's exceptional that you're here, and we thank you very much. This has been exceptional. I'm going to just ask each one very briefly the message that you'd like to leave with the audience, both here and around the world. We'll start again with you, Jennie.

Jennie:
The only message I can leave is the one that the American Cancer Society uses today, and that's hope, progress and answers. There are answers out there. They are making progress. Never, never lose hope.

Paul:
Thank you. Doug?

Doug:
I guess the message I would leave is that life is so very special, and one of the things that I encourage newly diagnosed individuals to do is to set goals that seem unachievable. If you set goals that seem unachievable, no matter what they are, you'll live life to the fullest, because you'll do things you never dreamed possible.

Paul:
Vernal?

Vernal:
I think one of the things that I would like to say is that because when I go out and speak I say that cancer is probably not the worst thing that could have happened to me. It has also brought some incredible things into my life. A lot of joys, a lot of great, great friendships within the cancer community, and I know that there are a lot of survivors out there that I haven't met yet, that I'm going to meet very, very soon.

Paul:
Ken?

Ken:
I want to thank you for your comment about doctors. It's a message that I hear and I think is important. But, basically that cancer is a treatable and a curable disease, and that it really is a team effort. It's with the patient and the family at the center of it and the doctors and everyone else really around them. But it is a treatable and curable disease. Thank you.

Paul:
Thank you very much. Let's give our panelists a big round of applause.

[applause]

Paul:
This brings our Town Hall Meeting to a close. We have many active discussion boards on the Cancer Survivors Network, and we invite you to continue this discussion and connect with each other on our Web site. And again, people without computers can listen to our entire collection of discussions and personal stories toll-free at 1-877-333-HOPE. Again that's 1-877-333-4673. We hope our discussion has helped to sort through some of the issues that may be part of your life. Thanks to our speakers, Dr. Julia Rowland, Susan Scherr and Pat Shifflett, and the sponsoring organizations, the National Coalition for Cancer Survivorship, the National Cancer Institute and the American Cancer Society. A big thanks to all our discussion guests, Jennie Cook, Dr. Ken Miller, Doug Ullman and Vernal Branch for their willingness to share a part of their lives with us today. We hope that some of their experiences will help you think about and talk about your own concerns in a healing way. And of course, thanks goes to you our audience here in Washington, D.C. and to you at home listening on your computers--which always sounds very strange to me--

[laughter]

Paul:
--on your computers, but that's the world we live in. Ain't technology grand? We invite your continued involvement and support of wellness for cancer survivors and caregivers everywhere. For the American Cancer Society's Cancer Survivors Network, I'm Paul Berry, wishing each of you a great day, today and every day.

[applause]

Paul:
Thank you and good night.

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