Adult Brain and Spine Tumor Research and Treatment

>>Hello everyone. Welcome to the latest Facebook Live on Brain
Tumor Research and Treatment hosted by the National Cancer Institute, part of the National
Institutes of Health. My name is David Arons, CEO of National Brain
Tumor Society and I will be today’s moderator. Today I am pleased to be joined by two world
renowned experts in the field of brain tumors, Dr. Mark Gilbert and Dr. Terri Armstrong of
the National Institutes of Health, National Cancer Institute, and the National Institute
for Neurological Disorders and Strokes, Neuro-Oncology Branch. Neuro-Oncology branch is a very special place
for the brain tumor community, offering many great resources and opportunities. You’re going to hear a lot more about the
Neuro-Oncology branch today. Now let me introduce and I’m pleased for Dr.
Gilbert and Dr. Armstrong to say a bit more about themselves before we get started. Dr. Gilbert?>>Thank you, David. Thanks so much for participating with us today. My name is Mark Gilbert. I’m an a Neuro-Oncologist and have been active
in the field of brain cancer research for over three decades. I am currently the chief of the Neuro-Oncology
branch, as you mentioned part of the NCI and NINDS here at the National Institutes of Health
in Bethesda, Maryland.>>Hi everybody. I’m Terri Armstrong. I’m a nurse practitioner and I have the Outcome
Section in the Neuro-Oncology branch, were we’re trying to understand the impact of the
disease on the patient and their families. I’ve been working with patients with brain
tumors for the last 26 years and I’m really happy to be here today.>>Thank you Dr. Gilbert, Dr. Armstrong. And as many of you know, May is Brian Tumor
Awareness Month. And actually the United States Senate jut
reaffirmed that it is Brain Tumor Awareness Month on a unanimous basis last evening. And so in honor of that we are discussing
current and future adult primary and spine tumor treatment and research today. And a new program organized by the Neuro-Oncology
branch focused on the care of patients with very rare central nervous system or CNS tumors. I welcome you to what promises to be a very
interesting discussion. In conjunction with the topics that will be
discussed in this broadcast we encourage you to ask questions about adult primary brain
and spine tumor research and treatment in the comments of this video. We ask that you keep your questions and comments
to today’s topic. If we do not get to your questions during
the event we will answer them as soon as possible in the comments. As a reminder, we cannot answer questions
about your treatment publically or specific treatment issues pertaining to you in this
setting. Please talk about these questions with your
treating physician. Additionally, if you have further questions
you can contact the NCI Contact Center at 1-800-4-CANCER or by visiting
for live chat help. OK, let’s get started. So Dr. Gilbert, can you give us an overview
of what brain cancer is and who it affects?>>Sure, thank you, David. So it’s very important that we realize that
as you mentioned the central nervous system is comprised of the brain and the spinal cord. And when we think of brain tumors there are
really two categories — Those we consider primary where the cancer arises out of the
brain or spinal cord and those that are secondary and that is that meaning they’ve spread from
cancers in other parts of the body, commonly lung cancer and breast cancer among others. So brain tumors, primary brain tumors in particular
are considered rare. We estimate approximately 25,000 adults are
diagnosed each year in the United States. And amongst them some are very rare. And as we’ll talk about later there are over
100 different types of primary brain tumors.>>Primary brain tumors are actually less
than 2% of all cancers diagnosed. And according to the FDA and other regulatory
organizations both in the United States and Europe, any disease that occurs in less than
200,000 people are considered rare. But some tumors are ever more rare and we’ll
talk about those later as Dr. Gilbert said.>>Thank you, doctors. And we know that they’re rare but we also
know they present very serious conditions for patients, can you tell us a bit more about
the symptoms, diagnosis and standard treatments for brain cancer? And what a patient might expect?>>Sure I would be happy to talk a little
bit about the symptoms that patients experience. It’s not uncommon for patients to present
very suddenly. In fact, it’s estimated almost half of patients
actually present to an emergency room with a sudden change or symptom that happens. In about 20% of patients that could be a seizure
but other things can occur including headaches and then symptoms that are related directly
to where the tumor is within the central nervous system. It could be things like weakness or difficulty
talking or even difficulty with memory. These symptoms are critically important in
alerting the patient that something is wrong and that medical care is needed. And sometimes the symptoms help us in defining
what’s really happening with the person.>>So once a person has a symptom it often
leads to a diagnostic test commonly a brain CAT scan or MRI is performed, which will show
that there is an abnormality in the brain. The patients will then undergo a nerve surgical
procedure that procedure is incredibly important for making an accurate diagnosis. And that diagnosis should be reviewed by an
expert in neuropathology. Certainly a misdiagnosis can result in an
incorrect treatment plan. So once a diagnosis is confirmed, we would
advice that patients seek out expert help and that’s typically by a neuro-oncologist
and it is certainly worthwhile asking the doctor what their experience is and how many
patients they’ve treated so that you get the optimal care.>>Thank you Dr. Gilbert.>>So as we think about –>>Oh keep going, please keep going Dr. gilbert
[laughing].>>Sure, so I just wanted to point out again
that there are more than a hundred types of brain cancer so you can see how important
it is that an accurate is made. And then the subsequent treatment is really
dependent upon the type of brain cancer. But it typically includes surgery and for
most of these cancers the more tumor that can be safely taken out during surgery the
better the patient will do. Often followed by radiation and chemotherapy
and increasingly they’re looking at immunotherapy as a potential treatment option. So the other point that we will talk about
in greater detail is that of involvement in clinical trials and the importance in clinical
trials and advancing our knowledge and helping us to develop better and better treatments
for patients with brain tumors.>>As Dr. Gilbert mentioned it’s really important
to get that expert opinion and an neuro-oncologist is somebody who has been specially trained
in the care and treatment of patients with brain tumors. It’s really important to get that expert opinion
and an opportunity for second opinions at the time of diagnosis or during your treatment
if there are treatment decisions to be made.>>Thank you. And just so we all can understand what we’re
talking about here, are all brain tumors considered to be brain cancer?>>So that’s a great question and so when
we look at the tumor we use a classification system that has been developed by the World
Health Organization, which puts brain tumors in a class ranging from grade one to a grade
four. Grade one tumors are considered benign and
can be cured with complete removal, where has grades two, three, and four are considered
malignant. The higher the number the more malignant the
cancer is.>>Importantly to that unlike other cancers,
which oftentimes they look at if the lymph nodes or other parts of the body are involved,
most primary brain tumors stay within this central nervous system. So this grading system that Dr. Gilbert talked
about is really important in defining how we treat patients with those cancers.>>Thank you. And another question that often comes up is
you mentioned there’s secondary brain cancer is cancer that starts at one part of the body
and then moves to the brain. So let me ask the opposite, do primary brain
tumors that start in the brain ever move to other parts of the body?>>So it is quite unusual for most primary
brain tumors to leave the central nervous system and I would say that the likelihood
particularly in diseases like glioblastoma, which is the grade four glioma, it’s less
than 100,000. So it is so uncommon that we don’t actually
do surveillance as we would do in system of cancers like lung and brain cancers.>>Thank you that’s very helpful. Now that we understand a bit more about that
there are many types of brain tumors and different types of treatment, let’s move to brain tumor
treatment and then pivot to research. So if you’re just joining us we’re talking
with Dr. Gilbert, Dr. Armstrong about brain tumor research, treatment and research. You can ask questions in the comments and
we’ll get to as many as possible at the end. Now let’s talk about survivorship and the
quality of life that patients have during and after treatment. Dr. Armstrong, what is that like? Are we improving survivorship and quality
of life for patients today?>>It’s a great question David, and something
that we’re really focused on here with the Neuro-Oncology branch as well your group and
others around the country and around the world. We know that the impact on patients can be
great. It’s estimated that over 50% of low and high-grade
tumor patients have difficultly even returning to work from the time of diagnosis. We know those symptoms that I talked about
can occur at the time of diagnosis, but some can also occur throughout the time the person
is dealing with the illness and that can be difficult. In addition to people like us focusing on
understanding what that impact is and trying to improve it, there’s a real understanding
of that within understanding the impact of our treatments. So the FDA has identified that they really
are interested in how treatments make the patient feel and function and within our clinical
trials we try to identify that and monitor that for patients throughout the trial. So we really understand that the impact is
that we’re getting. In addition there’s a real emphasis and knowledge
that there are people out there living with the diagnosis of brain tumors and the Central
Brain Tumor Registry of the United States has reported recently that it’s estimated
over 700,000 people in the U.S. are living with the diagnosis of a primary brain tumor. So we have to identify those issues and they
face including care issues, financial issues that they may face, and then impact on the
extended family. The Society of Neuro-Oncology has developed
a Survivorship Care Plan, which is a nice guide for physicians outside the fields of
neuro-oncology to know how to help patients cope with their illness and deal with the
issues they may face as a result of it.>>Thank you. It sounds like there are a lot if efforts
going on to try and improve the care and quality of life for patients. And as you mentioned earlier Dr. Gilbert and
Dr. Armstrong, there are many different types of brain tumors and among them, although all
brain tumors are considered rare, there are some especially rare CNS tumors. And so what are some of those especially rare
CNS tumors and what efforts are being done to address those rare tumors? Maybe you could start with how do we define
a rare central nervous system or CNS tumor? That’s a great question. If we look at the definition of rare diseases
used by the NIH and other organizations, in general there are any diseases that occur
in less than 200,000 people per year. So all primary brain tumors could be considered
rare. Within the over 130 different types of primary
brain tumors, there are some that are exceedingly rare. And with the Neuro-Oncology branch we’re focusing
on those tumors that had an incidence of less than 2,000 to 3,000 people per year diagnosed
within a special effort that we call NCI CONNECT and which we’re trying to build networks,
partner with advocacy in patients to understand these diseases. Both the impact on the person and develop
new treatments for them.>>Well, Dr. Armstrong just to go a little
bit level deeper, do all — do all of these rare CNS tumors have a standard of care that
doctors can deliver or do they not? Where do things stand with terms of standard
treatment protocols for these rare CNS tumors?>>That’s a really, really important question,
David. And unfortunately some of these tumor types
do not have a standard of care because of the low incidence and that we haven’t been
able to do trials to identify what really helps the person in their survival. So part of our effort is to try to identify
and understand that. And we’re doing that through several of the
projects within NCI CONNECT.>>And if I could add that there are lots
of challenges faced by patients who have a rare cancer, particularly those with the rare
CNS tumors. And oftentimes there’s a delay in diagnosis
because the appearance under the microscope is unusual and again, with the delay in diagnosis
there’s often a delay in initiating treatment. As Dr. Armstrong mentioned, it is difficult
to establish a standard of care if in fact we have difficulty assembling enough patients
into a clinical trial to actually test it in a way that we can then use that to establish
what is the best practice and care for those patients. Additionally, the patients with these rare
diseases feel like they’re alone and can feel isolated and oftentimes their healthcare providers
are not familiar with the disease and again it leads to uncertainty and anxiety on the
part of the patient. And one of the goals of the NCI CONNECT is
to bring together patients in advocacy, as well as a network of centers and investigators
to improve the outcomes for patients with these rare diseases.>>Dr. Gilbert just, could you expand a little
bit more in terms of what should a patient or patients think about asking if they have
one of these very rare brain tumor types to make sure that the institution or hospital
they’re going to has the kind of expertise in their area?>>Well, I think that’s a great question. I would say that given a ability for the medical
community to communicate particularly with all of the Internet and other opportunities
that patients should ask their treating or their healthcare providers their level of
expertise and knowledge. And if they get a sense that it is not very
high to really reach out to Centers of Excellence in the setting of where CNS Cancers we would
welcome inquiries from patients with these diseases. And again some of them will fit into the NCI
CONNECT, but overall I think we would be happy to provide some consultation.>>And I think I would add to that those some
simple questions that you can ask if you’re diagnosed with a rare CNS tumor or really
any central nervous system tumor when you seek out healthcare is how many of these types
of tumors has that particular physician treated in the past and how many they’ve seen in the
last year will give you an idea of their experience with that. You know, no one wants to see a physician
who maybe says that they’ve only seen one of these tumors before. You may not feel comfortable with that. The other thing that’s really important within
that is to have a partner with you when you see a physician or ask these questions. It could be really overwhelming and there’s
a lot of information that could be shared. But if you’re able to have somebody with you
at the appointment that can hear what you hear, that can take notes for you, sometimes
then you can have that information and remember it after you’ve been given so much overwhelming
information in a short period of time. So partnership with someone to help you look
for that help and support and seek out experts and here are all important ones.>>Agreed.>>Thank you, Dr. Armstrong. And for those of you who are just joining
us we talked about so far two major concepts. Once is understand and know your tumor. What do you have the importance of pathology,
Dr. Gilbert underscored, and second Dr. Armstrong, Dr. Gilbert talked about the importance of
finding the right expertise for you providers that really know your tumor type. And so no let’s move to a third concept is
what are the new treatment approaches for CMS tumors including rare CMS tumors? Dr. Gilbert?>>Yeah, so thanks David, this is obviously
critical and I would say very, very exciting. As many people know there have been tremendous
advances in our ability to investigate cancers. We can do genetic analysis that would have
been unheard of even five years ago to better understand biology of the cancer to start
asking questions about specific treatments. We consider these treatments targeted therapies. We like to imagine that they are personalized
treatments based on the specific characteristics of the cancer. So the targeted therapies remain an area of
active investigation. And what we’re discovering is that many of
these cancers even though they fall under the same name, for example glioblastoma that
they have individual differences and it’s through these types of genetic analysis that
we’re able to think about targeting specific aspects of the cancer. In order to do this we need to have very large
collaborative efforts and I’m very, very pleased to tell everybody that the brain tumor research
community is a very collaborative environment and we have studies planned with colleagues
not only in North America but also in Europe and Asia. And we’re bringing all of that expertise together
for the common purpose of making treatments better. We’re not stopping with targeted therapies. Of course everybody is interested in immunotherapy. This has been a fantastic advance in other
cancers. Diseases that were previously incurable, they
are now putting patients into long-term remission with immunotherapy. And we would like to of course see the same
type of success in the brain tumor field. But we are also recognizing that it’s more
complicated treating brain tumors than other cancers. And so there are active investigations going
on both in the laboratory as well as clinical trials to better understand immunotherapy.>>I’d probably add about immunotherapy, it’s
a concept that you may read about or hear about a lot and it’s really about harnessing
the persons’ immune system to help battle the cancer. And that can be done either passively or actively. Passively by harnessing that immune system
or actively by actively engaging your immune system. So it’s really using a therapy to help your
body fight the cancer.>>Yeah, I think that’s a great explanation
and it will likely turn out that is won’t be a single immunotherapy that works, it will
have to be a combination of strategies to overcome some of the difficulties in getting
an immune reaction in the brain. I also want to talk about metabolomics. So we have discovered that cancer cells have
a unique metabolism and there are active studies trying to target that metabolism again looking
for that Achilles heel in the cancer and having the ability to specifically target the cancer
without causing much in the way of side effects. And of course all of this means that we need
to focus energy and have participation in clinical trials. So there are a large number of clinical trials
available across the United States, as well as Europe, and Asia. But focusing on the United States, if people
are interested in participating in clinical trials and we can encourage it enough, there
are ways of finding out what’s available, ask your healthcare providers, at,
as well as other places to look to be able to navigate to clinical trials. There is always the issue of paying for some
clinical trials. This has been a challenge. We are very pleased to say that for patients
who participate in clinical trials through the National Institute of Health here at the
NCI Bethesda campus, we’re able to cover the cost of clinical trial as well as some of
the transportation and lodging.>>So if you’re interested in coming here
it’s important to know that the initial screening cost wouldn’t be covered but if you’re on
a trial, the trial therapy is provided at no change and there’s also support for travel
and lodging for people who come here. And definitely that website
is a great resource for finding trials that are available around the country, particularly
if you’re interested in trials that may be closer to where you live. And then finally I’d add there are different
phases of trials. And they are from phase one, which we’re really
looking at the efficacy of the treatment. Phase two where we’re looking at to see if
it has efficacy with the tumor. And then phase three to see if it’s better
than the standard treatment. And each phase of these trials are really
important to the development of new therapies and advancing the care we can provide to patients.>>Thank you Dr. Armstrong. Dr. Gilbert, one question that often comes
up is what are the different types of treatments a patient needs to think about based on the
grade of their tumor going from the lowest grate or benign tumors, to the highest grade
tumors? Do all brain tumors patients of all grades
need to think about all of these different treatment modalities or does that differ based
on the grade and type of tumor you have?>>So David this is an excellent point to
add. There is no cookbook, as we say, that covers
all brain tumors. And so we need very important information
starting with the type of tumor, second is the grade of tumor, and then third as our
knowledge is expanding we are increasingly relying on genetic changes within specific
tumors to help guide treatment. This has been a very pivotal advance in our
way of approaching these cancers, recognizing that certain treatments were the best for
subtypes or within the individual cancers. As we continue our work and as the availability
to genetic testing increases, we will be able to further refine the treatments. We recognize that the treatments have to be
individualized and within each patients treatment plan, factors such as their functional status,
and concurrent illness has to be incorporated into the decision-making process to optimize
the therapy for each patient.>>So it’s really important if you’re somebody
with a brain tumor or a loved one has a brain tumor that taking care of themselves in terms
of being as active as they can, having the support they have from family, or even therapists
if that’s needed, undergoing physical therapy they have issues with weakness or speech are
really important. And then finally it’s circling back to what
we talked about before in relation to the symptoms. It’s not uncommon for patients to need other
medications during their illness to manage those symptoms. Those include things like cortical steroids,
a common one that’s used as dexamethasone to control brain swelling. Oftentimes this is needed to reduce neurologic
symptoms or headaches. And then those patients who have had seizures
or are thought to be a heightened risk, they’re also on anti-convalescents or anti-seizure
medications. And knowing what medications you’re on and
what you can do to manage your symptoms is critically important. And keeping an open line of communication
with your healthcare team about what symptoms you’re having will make a difference in the
therapies that are available to you and also your quality of life.>>Yeah, and I would add to that it’s very
important that you tell your healthcare providers about all the medication you’re taking, even
some of the treatments that are considered alternative.>>That’s very helpful and you know, it seems
like what you’re saying is there’s the standard treatments and maybe you could enumerate what
those are once again for our audience, but then there’s also the subject of alternative
treatments, you’re saying please talk to your medical providers and your care team about
that. And just a reminder, in a few minutes we’ll
be taking questions. Please put your questions below and we’ll
get to as many as possible. Before we pivot to the next subject of research,
let’s reaffirm what are the — just the major treatment modalities for brain tumor creations
from low grade to high grade just so we know what those are as we move into research to
improve those treatments? Dr. Gilbert?>>Sure, so the first step — sure the first
step is a surgical procedure. For most of the brain tumors that we deal
with the more extensive the removal of tumor the better. Again, this needs to be done with safety in
mind . So depending upon the location within the central nervous system that will dictate
how safe a reception can be. So there are areas of the brain that we call
eloquent where functions such as speech, language, memory, we want to make sure that those are
not compromised.>>And importantly that’s true whether it’s
a low grade or a high-grade tumor. So you talked about differences maybe based
on that, but where the tumor is in the brain really determines the surgery even more that
the grade of the tumor.>>That is correct. And so following the surgical procedure, which
is used both to help with the treatment and as I mentioned before for grade one tumors
a complete removal is often curative for the other grade two, three, and four tumors. It is helpful to have an extensive recession. But it also, very importantly, provides us
the tumor tissue to make the most accurate diagnosis. Following that, one of the foundations of
treatment for most brain tumors that require additional treatment, there is radiation therapy. Radiation therapy has evolved greatly over
the last three decades. There is tremendous precision. The delivery of radiation therapy, which maximizes
the delivery to the tumor and minimizes the exposure of the surrounding brain through
the potential harm of the treatment. So we are very excited how much improvement
there has been in radiation therapy. There are different modalities. Typically it’s external mean radiation therapy,
but there are other modality such as focused radiation, like radial surgery. This is often either accompanied by or followed
by some form of chemotherapy and again that is very much dependent upon the tumor type
and the tumor grade.>>Thank you, Dr. Gilbert. And we’ve heard that some patients are wearing
headsets for another type of treatment delivery. Could you say a word about what that is?>>Sure. So thanks for reminding me. There is a device that provides fields, electromagnetic
fields through the tumor called tumor-treating fields. It is the NovoCure device and recent studies
in patients with newly diagnosed glioblastoma are indicating a survival improvement with
the use of this device. So increasingly patients are considering this
as an adjunct to their surgery, radiation, and chemotherapy.>>And I think importantly what this highlights
is that at each step in the process a patient has a number of choices that they can make
regarding their care and they also have a number of things that the clinician providing
care need to consider whether it’s the extent of surgery, the type of radiation therapy,
or the use of some standard treatments that are available. So any questions that people have they need
to talk to their healthcare professional about that so they can be informed and make the
choice that is right for them.>>Thank you. And Dr. Armstrong, I’m sure you’d agree that
while patients have choices we would like for there to be more and better choices our
there for patients. And that really brings in the subject of advancing
research. Let’s turn to research now and what we hope
is next. Dr. Gilbert, Dr. Armstrong, could you give
us a sense of what’s the future hold for brain tumor research?>>Well, I think the future looks very promising. As I mentioned before there is a level of
international collaboration that is unprecedented. Everybody is recognizing that there needs
to be a collective effort to make advancement. And so the scale scope and sophistication
of our clinical trials is increasing our integration of laboratory science, to our clinical research,
and just as importantly the integration of patient outcomes measures into this research
is giving us insights into what our clinical trial really mean and how to build on them
in a way that’s never been done before. So I’m very excited. I’m excited about the fact that we are making
inroads both at the genetic level to find targeted therapies, but also immunotherapy
and looking at it in a way and using techniques to study immunotherapy that are really cutting
edge and will hopefully lead to better understanding of immunotherapy for brain tumors, which will
hopefully translate into much better treatment.>>Here at the Neuro-Oncology branch, we’re
doing a couple things to try to really understand the impact of the disease on a person. And one of the things that we’re exploring,
particularly in rare tumors is what makes one person more at risk than another? And this is a common questions that patients
come and ask us. So we have a web-based survey that we’re doing
with rare tumor patients in which we ask about exposures and family history, working with
experts, epidemiologists from around the country, we’re obtaining DNA to try to identify that,
and with our natural history study we’re engaging with patients and following them throughout
the course of their disease and asking them questions along the way about how they’re
doing and tying that in to what we know about the tumor as well as the imaging, so we can
better identify areas that will then help to make patients lives better.>>Thank you. That’s really appreciated and it sounds like
there’s so much exciting research happening, a lot of new doors being open, and that sets
up how the NCI CONNECT is really also driving research forward. And the National Brain Tumor Society is excited
to partner with the NCI on the NCI CONNECT project to advance research and help patients
particularly with these rare CNS tumors. Can you share a little bit more information
about that new and exciting endeavor?>>Yeah absolutely this is a program which
we have had funded through the Biden Cancer Initiative that we’re really excited about. We’ve identified 12 tumor types that Dr. Gilbert
will share with you that we’re focusing on really understanding what is the risk for
these tumors? What is the impact of these tumors? And then focused on developing treatments
for patients with these tumors. And probably most importantly we are partnering
directly with advocacy organizations and with patients bringing us all together to the same
table to try to understand the impact and work together to improve the lives of patients.>>So let me go through the tumor types that
we have selected for the beginning of NCI-CONNECT program. The hope is we will have opportunity to expand
this as time goes on. So the NCI-CONNECT tumor types include atypical
teratoid rhabdoid tumors, brainstem and midline glioma, choroid plexus tumors, ependymoma,
gliomatosis cerebri, medulloblastoma, meningioma, oligodendroglioma, pineal region tumors, pleomorphic
xanthroastrocytoma, supratentorial embryonal tumors, or PNETs, and primary CNS sarcoma
or secondary CNS sarcoma also known as gliosarcoma.>>So Dr. Gilbert has read the list and I
think you all were able to see that list of tumor types. We also are sharing this through social media,
through our hashtag NCI CONNECT and through out neuro-oncology branch website as well.>>Well this is very exciting. This offers up some really new research and
participatory opportunities for rare, these rare CNS patients to engage with the NCI to
help advance research by providing their data but also for patients to call the NCI CONNECT
program and talk about their disease. And so just taking the oligodendroglioma community,
1,500 Americans alone get oligodendroglioma and this is a great new opportunity to get
involved in a way to work together with the NCI to advance research and get help at the
same time. But of course, we want our audience today
to know the neuro-oncology branch is even more than that and is an outstanding place
to go for a second, third, or even fourth opinion depending on what a patient and their
family is looking for. As said before it’s a free service and it
really is something that few countries and certainly not every cancer type has a neuro,
a branch, devoted to their type of tumor the way we have for the neuro-oncology branch. So for our audience, the NOB as we affectionately
call it is a very special place that does a great service to the brain tumor community. Let’s pivot now to our first viewer question
for Dr. Armstrong and Dr. Gilbert. Not surprisingly about how brain tumors come
into being, and so what progress has been made to understand the origin or of primary
brain tumors, basically how did they get there in the first place?>>So that’s a great question. We are doing I think a very good job in understanding
what the cell of origin is, so what cell within the central nervous system has become malignant
to form the cancer, but we don’t really understand in most patients why that happened. They are uncommon enough that we don’t have
the types of links, like lung cancer with smoking or other environmental exposure. But, you know, we certainly are investigating
to see if there are particular patients who have some type of susceptibility and we’re
doing that along with our colleagues in epidemiology.>>Yeah, I think I would add to that that
the person who asked this question, you’re not alone in this question. Probably one of the most common things that
people ask us is why did this happen to me? And also what about my children? So, you know, in general we don’t know in
any individual why a tumor developed for them. It’s estimated that in less than 5% of all
primary brain tumors there’s an inherited condition that led to it, so most patients
do not have that issue. And it’s only in those folks that we then
consider or concerned about their children. So you’re not alone in that question and as
Dr. Gilbert said, there’s many people working hard to identify it but there are very little
risk factors that we have for the occurrence of brain tumors and even less is known about
the rare tumors and is the reason we’re doing our work.>>Thank you. Our next viewer question is, are there any
immunotherapy treatments accessible for glioblastoma patients outside of clinical trials?>>So this is a very important question and
I would say to date we do not have substantial evidence that immunotherapy treatments, at
least in their current form are effective. And so I would really encourage people to
participate in clinical trials because that’s where we will do the work to determine whether
or not a treatment is effective. Some of the immunotherapies do have significant
side effects and in the absence of knowing that they work, I would be reluctant to encourage
people to do things that have not been proven outside the context of a clinical trial.>>And Dr. Gilbert, just a follow up on that. What advice do you think patients and their
families should consider or even ask themselves or ask their providers to assess their sense
of risk benefit in deciding whether or not to enter into a clinical trial?>>So that is a great question and I think
that’s a very important discussion to have with your physician before you make a decision
to participate in the clinical trial. Clinical trials are very, very carefully reviewed
and vetted. so that we know that we take all the possible
measures to make them as safe as possible and to make sure that when we complete the
clinical trial we have answered an important question about that particular treatment. So I encourage people to consider clinical
trials and to realize that is the way we will advance our knowledge and ultimately develop
and discover new and ineffective treatments. So again, the safety concerns are all being
carefully monitored and it’s an important way to advance knowledge.>>There’s some really practical questions
that people may want to consider and I know the NCI, as well as the NBTS an other groups
have a wonderful list of questions that may help you when you visit with your clinician
and physician and ask them about at. Simple things like how often do I need to
come to the hospital? And what other medications may I have to take? And how long does this treatment last? How often will MRIs be reviewed? Understanding the logistics of the treatment
oftentimes can help you be prepared for what you need to do in the future and help you
be able to tolerate the treatment as you know what to expect as you go forward on a clinical
trial.>>Thank you, that’s very helpful information. Our next viewer question is why are some brain
tumors inoperable while others are operable?>>So it’s a great question and again everything
in medicine, particularly in considering a surgical procedure is a balance of risk and
benefit. And so depending upon the location of the
tumor within the central nervous system really does depend how operable it is. So tumors that are deep in the brain are difficult
to get to and a lot of the neurologic function is in a very confined space. So there’s a higher risk of causing neurologic
harm by the deep-seated tumors. Again, other areas in the bigger part of the
brain, the cerebrum, some areas are actually quite amenable to surgery so what we do know
is areas like the frontal lobes are particularly amenable to surgery because there’s a lot
of duplication of function between the right and left frontal lobe. So it’s possible for a neurosurgeon to remove
quite a bit without harm, where as other areas, as I mentioned before are eloquent and there
is functions that would be at risk if too extensive of a surgical procedure.>>I think I would add to that if the tumor
is in more than one area of the brain, sometimes that makes the risk of the surgery outweigh
the benefit. Or if you have other medical conditions that
may make the surgeon concerned about putting you under anesthesia or the recovery time,
sometimes that can also effect whether a tumor is operable. But if you’re told that your tumor is inoperable,
those are important questions for you to ask so you understand what was used to make that
decision.>>Thank you. Our next question is how can patients help
to advocate for best practices or the right practices perhaps for them, in the surgical
and neuro-oncology environment?>>So, you know, I think there are a number
of ways that that can happen. You really need to be an advocate for yourself
or have somebody designated within your family who can be that advocate as well. It’s really a two-way conversation with your
healthcare provider as well. You need to be able to have your questions
answered in a way that you understand, but you also need to be able to know you need
to share information with your provider. So communication is really the key to advancing
care provided by neuro-oncology healthcare professionals.>>And the other thing I would add to that
would be to really consider a second opinion and to make sure that before you make an important
decision about a treatment that you are comfortable with that decision and many of us in the field
are very comfortable with patients seeking a second opinion and we really encourage so
that when a decision is made it is a decision that everybody feels was the right decision
at the time.>>Thank you, Dr. Gilbert. And just to say — emphasize what you’re just
saying, we hear from a lot of patients that they worry about hurting their doctor’s feelings
if they go get a second opinion and could you speak to that just a little bit more so
we can really get this straight?>>That’s a great question and very pragmatic. As a doctor I would strongly encourage, again
the use of a second opinion. The physicians that I interact with on a routine
basis all feel very strongly that patients need to feel comfortable with their decision. We have different opinions and different approaches
to the treatment of these diseases. And to hear other approaches and other philosophies
of treatment are very helpful in recognizing that which we can say resonates with the patient. And so I don’t think that that’s an issue. I would again, make a strong recommendation
for that opinion and you can have a third opinion but again, you need to balance the
number of opinions with the time frame. So you don’t want to waste too much time seeking
opinions. Get some opinions, make a decision.>>Thank you.>>And I would just add — I would just add
to that — sorry, David — that you know, there are certain points that it’s good to
think about getting a second opinion when the tumor is first diagnosed or if their is
recurrence and you’re thinking about other treatment options. That’s a really good time to seek a second
opinion. You know if you’re doing well and on a therapy,
sometimes the benefit to that second opinion may not be as great as if you’re at a point
where you need to make a decision about it. And then we always contact the referring physician
and make direct personal contact with them to let them know what our thoughts were and
partner with them. And I would encourage you to ask if you’re
at a second opinion for that to happen, so you know that there’s communication again
between the providers.>>Thank you. And I’m assuming you would also encourage
second opinions at the surgical level as well or is that different?>>So that we would and we would encourage
patients to consider seeking out a neurosurgeon who is an expert in brain tumor neurosurgery. On rare occasions the need for surgery is
quite urgent. But in most instances there is time to consider
alternative surgeons. Oftentimes patients with symptoms wind up
in a community hospital emergency room and if they had a few days to seek out another
opinion they hopefully would get to a center of excellence where the neurosurgeons have
true expertise in doing the neurosurgical procedure.>>Thank you. Our next viewer question is, is glioblastoma
with a high mutation burden a — and this question the number 320 is here, a rare CNS
tumor. Are there experts who treat patients with
such kinds of glioblastoma?>>So is it a rare CNS tumor? I think the answer to that is that we are
increasingly doing genetic testing on glioblastoma both at the time of diagnosis and that recurrence. And we’re finding that the mutation of burden,
and many of these cancers increases over time with treatment. And so we don’t know whether or not it’s truly
rare. We suspect that it will be increasingly recognized
and I would say that with that increased recognition the experts in the field, neuro-oncologists
will be working to develop therapies specifically for patients with what we call hyper mutated
malignant glioma.>>Thank you Dr. Gilbert. Our final question, our final viewer question,
is at what point in treatment is it appropriate to consider a clinical trial? And I would just add, if you could also answer
that question in light of these different grades or different grades of tumors we talked
about earlier.>>We would really encourage people to think
about clinical trials at all phases of the disease from the time of diagnosis through
recurrence. You know, clinical trials are oftentimes changing. There are new trials opening all the time. So we can’t say today with the trials that
will be available in six months. However, we do know that by the use of clinical
trials we’ll be evaluating new therapies and advancing the care, hopefully for that individual
person and also for all patients with brain tumors. So it’s important at those important points
in your disease to think about if there is a clinical trial that’s available to you and
that meets what you want for your care and your particular disease.>>Right, and again I would reiterate that
clinical trials have been carefully reviewed and in the decision making process as the
patient, as the patient’s family, think about what the goal of the trial is and if that
is something you want to participate in and help advance our knowledge then we encourage
you to do so.>>Thank you Dr. Armstrong. Dr. Gilbert. Thank you doctors. That’s all the time we have today for questions. I want to thank you both for spending time
with us and time with the brain tumor community. For our viewers we’ve learned a lot here today. We’ve learned about the importance of knowing
your tumor and that there are many different types of tumors, some of which can be extremely
rate. But even those rare tumors are getting more
and more attention thanks to programs like the NCI CONNECT. We also learned about todays standard treatment
options ranging from surgery all the way through radiation, chemotherapy, targeted therapy,
and even devices. We also learned a bit about where research
is headed, particularly in the area of immunology oncology and in other areas and the importance
of that. And we talked about the criticality of clinical
trials to patients and to advancing research. We’ve done a lot here today. It seems like also we’ve learned about how
we can take advantage of utilize the neuro-oncology branch of the NCI that is so important. And before we close we’ll ask Dr. Gilbert,
Dr. Armstrong, to say a bit more about the NOB. But again, thank you both for spending time
with us and before we move forward, Dr. Gilbert, Dr. Armstrong, do you have anything else you’d
like to add before we go?>>Well, I would like to first thank you very
much, David, for working with us on this fantastic program. You’ve done a stellar job in hosting. We greatly appreciate your work not only here
but your work with the NBTS. I would like to thank all the participants
who have joined in to this Facebook Live Event and I would like to thank all of the patients
and care providers who really partner with us. Those who are in the field, who are working
to make better treatments. We cannot thank you enough for your confidence
in us and your support of us as we try to navigate better treatments in the future.>>Yeah, I would just echo my thanks. This has been an amazing opportunity. Thank you, David for working with us. It’s always fantastic to work with you and
it’s really that partnership, and by partnering with patients and advocacy groups, and providers
like Dr. Gilbert and myself that we can hopefully make a difference because none of us can do
this by ourselves.>>Well, thank you. The feeling is mutual. I would like to remind viewers that this video
will appear on both the National Cancer Institute Facebook Page and on the NCIs YouTube Channel. Any questions in the comments that we did
not get to today will be answered shortly. To find out more about the trials mentioned
today or to ask questions on brain tumors, please vising the NCIs contact center 1-800-4-CANCER
or by email at Live Chat on You can find other cancer clinical trials
at Thank you all for tuning in to the latest
social media event hosted by the National Cancer Institute. Thank you again to the leadership of the Neuro-Oncology
branch. Very much appreciate the time of Dr. Gilbert,
Dr. Armstrong, on behalf of the brain tumor community.>>Well, thank you David and thank you everybody
for your participation.>>Thank you. Bye bye.

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