Brain Tumor And Brain Cancer

>> hi. i'm rich levao. at bloomfield college, we believe all citizens need to be informed about the important issues that affect their daily lives. that's why we're proud to support programming produced by the caucus educational corporation and their partners

in public television. >> brain tumors--symptoms, treatment, and recovery, next on "caucus: new jersey." >> funding for this edition of "caucus: new jersey" has been provided by jfk medical center, md advantage insurance company of new jersey,

the merck company foundation, and by wells fargo. >> welcome to "caucus: new jersey." i'm steve adubato. joining me here in the studio to discuss the reality as well as the misconceptions associated with brain tumors are dr. joe landolfi, medical director, jfk

brain tumor center, stan shrodo, support group leader, central new jersey brain tumor support group, our good friend allison hofmann, who was a patient of dr. landolfi, and also ilana unger, who is a senior occupational therapist at kessler institute. i want to

thank all of you for joining us. throughout this program, you will see our website up, but you will also see the njbt.org website. this website, folks, so you know, will connect you to support groups throughout the region. it is very important. this program is not

just about the clinical aspects, the research issues associated with brain tumors, but the other side of it is the human side-- support groups, where you can find help, where your family can find help. doctor, help us. make some sense of this for us. when we talk about brain tumors,

there are a lot of misconceptions. first of all, there are benign and malignant brain tumors, and there are brain tumors that are at different stages. break that down for us before we begin to get into the other part of the discussion.

>> sure. there are several types of brain tumors. as you said, there's benign and malignant. even the benign brain tumors can recur and come back, so even if it's removed surgically, those patients should be followed to ensure that the tumor doesn't come back.

but those tumors are typically outside the brain and push on the brain, rather than being within the brain itself, and surgery is typically the only treatment that's necessary, whereas the more malignant tumors will require radiation and chemotherapy. so if there's

about 240,000 new brain tumor cases a year, about 170,000 come from another part of the body-- say, the colon or the breast or the lung--and go to the brain. the other ones are primary brain tumors that arise from the brain themselves. some of them can be hearing nerve tumors

or pituitary gland tumors or gliomas. >> what are they? >> gliomas. >> those are the malignant and probably the most common. i take care of all of them, but the majority of what i see are the most malignant brain tumors,

the gliomas. >> it's interesting. allison, we should say, when i say friend of the show, we go back a long way. introduced to you through our good friend and board member annette catino from qualcare, where you've worked for many years. you're

a patient. >> yes. >> and everyone's case is different, and we'll talk about your family and the very powerful story that you have to tell and the very strong commitment you have now having to do with your son matt.

you were diagnosed when? >> 2003. >> with what? >> an anaplastic astrocytoma, which is a type of glioma. >> ok. there are stages. my understanding is you were stage 3. >> correct.

>> of potentially 4. >> 3 or 4. >> very serious. >> and i remember when that happened, and it was very unclear what the situation would be in the future. the prognosis was... >> clearly, before i met joe,

i had gone to several doctors who told me less than a year, and i'm happy to say, i just celebrated my 9-year anniversary. >> and so...well, let's get into the support group thing right away, because not only are you celebrating the ninth year

and not only are you working very hard and successfully, but you're contributing a great deal. why is it that you made such a commitment, not just to be healthy yourself--because you go back every 6 months. >> ok. but why have you made such a commitment to help so

many others who were diagnosed with brain tumors? and in what way have you made that difference for them? >> well, i think key for me was, as joe discussed, this is such a rare disease that when you get diagnosed, you feel that there's very few people

who truly understand what you're going through and there are very few resources. i was able to connect with stan and the group. >> how did you do that? >> actually through one of joe's associates at the time. joe has a fantastic nurse, patty anthony, and patty

understood the importance of not only the physical side, but the emotional side and really needing to connect with people that understand exactly what i was going through. so i shortly thereafter met stan, who i've known for several years at this point, and felt just

a real relief that i was able to connect with people who understood what i was going through, and even for my husband at that time, that there were caregivers there, as well. >> made a huge difference. >> and, stan, help us on this. in 1992, you lost your son.

>> we lost him in '94. >> he was diagnosed in '92. >> he was diagnosed friday the 13th of december in 1991. >> with? inoperable. it was down in this area, growing into the brainstem, where the nerves come up into the bottom of the brain.

they were able to do a biopsy. however, it was inoperable. we had doctors tell us, "well, i could operate on that," but when they would get the films and look at them, they'd come back and say, "oh, we didn't know you meant there." so...you know, you're kind of out there.

>> right. what symptoms did he have? >> his symptoms were totally not typical of anything with a brain tumor, anyone with a brain tumor. he could not sleep. he would sleep for 4 to 4 1/2 hours a night and then wake up, he said, like somebody stuck him

with a pin. this went on for about 3 months before he had a seizure at his work. because he was getting so run-down, the family doctors thought he was under stress because he was a new engineer, had a job. >> he had just graduated from college when he was diagnosed.

>> he graduated in may. he was diagnosed in december, yes. >> what was his initial reaction, your son? >> uh...well, you're 22 1/2, 23 years old. it's like just somebody cut your legs right out from under you. he was... he took it very hard, but the

attitude was, "well, we've got to do something. let's find out what we can do to get rid of this thing." when we found out that there was basically nothing other than chemo and radiation, you know, it was, let's go with that, you know? >> and the support group--

where did that come in for you? because my understanding is your son's first reaction was not, "yeah, let's do that." it was not that. >> his was, with the tumor, "let's see what we can do to take care of it." >> let's take that on.

>> but when you're talking about the support group, patty anthony founded the group in october of '91. my son was diagnosed for sure, after this 3- or 4-month period, in december. we went to our first meeting in february. we would have gone in january, but he was in having

his biopsy. his attitude was, "well, you know, dad, i'm not really a support group kind of guy." he was a big guy, 6' 3", into sports, weighed about 180 pounds. >> wasn't into it. >> no. >> what happened when you went?

>> well, he got there, and we're driving home, and he says, "you know, i think these people get it. i think they understand. when i told them this was happening or that was happening, they got it." it wasn't like, "oh, you'll be ok." they knew it's serious,

but they understood and gave him some things to try to get around different problems. >> it mattered a great deal. >> by the way, we're only scratching the surface of your family's story and your son's story. let's make sure we keep putting up that website

because there are people watching right now, either yourself, a family member, a loved one, a friend. the website is up right now. stan and his colleagues are there, and it doesn't matter where you are. they will help connect you to a support group,

and that's a piece of a very complex equation. i'm going to come back to you, doctor. the treatment piece of this is huge, right? because at kessler, the treatment that you provide is largely a product of the kind of tumor, where it affects you, and--because i understand you

do physical therapy, occupational therapy, speech therapy, and sometimes, someone could have a brain tumor and come in and it's not a big deal; other times, it's a very big deal. right? >> right, so we can see patients that sort of run the gamut of

they really have very little deficit after they've undergone surgery or radiation or chemo, and that maybe they just have some low endurance, and we help with that. but on the flip side, we can see patients, depending on where tumors are and the extent of what has happened

between the tumor and surgery and everything else that goes along with it, that they may have trouble even just keeping their eyes open or sitting up. patients will receive services that they need, so whether it's physical therapy to work on overall strengthening, learning

how to walk if that has been affected, even just sitting up on their own or getting up and down, in and out of the chair. they'll see speech therapists if their speech has been affected or their swallowing has been affected, so whether it's their ability to communicate or

ability to enjoy the foods that they want to every day. and then occupational therapists work, along with speech therapists, on their cognition. maybe their memory has been affected or their problem-solving skills. again, a lot of it can depend on where in the brain the tumors

are. or doing everyday things like feeding themselves again or being able to write, being able to use a computer, skills they need to get back to work. >> allison, did you go through therapy? >> i did not. >> did not need it?

>> did not need it. >> doctor, is every case unique, individual? >> every case is unique and individual. i think the majority of cases do go through some sort of rehab, but the right frontal lobe of the brain is a less eloquent area of the brain.

>> less eloquent. >> yeah. it involves not critical function. in other words, the right frontal lobe of the brain, you can get some personality deficits there. if it's higher up, you really get no deficits, and so those patients may not require

physical therapy for weakness or other issues. but the majority of patients do undergo some therapy. >> let me...and excuse me for doing this, stan, but i just, in an effort to try to educate and inform and try to make sense of this--your son matt was

diagnosed in '92, and what i understand, as a non-clinician, with a case that was comparable to allison's. >> very different. yeah. very different. >> ok. here's the problem. >> he had the same tumor. >> same tumor, different

location. like you said, it depends on where it is. >> oh, boy. same tumor, different location. location matters big-time? >> big-time. >> the location of allison's tumor gave her an opportunity to be here.

>> to be here. >> with matt, that was not the case. >> that's right. tumors in the brainstem are what we call infratentorial--below the hemispheres of the brain. adult patients do worse with those type. well, adult patients

do worse when they're in that location versus in another location, but do better than children with the same tumor in that location. >> cause? >> there's no known cause. we are identifying genetic differences within the tumors

that we are now using to help target therapies, but there's no smoking lung cancer kind of cause/effect identified as yet with tumors of the brain. >> beyond the clinical side of this--and i know we're moving around because i don't even know what logical or rational or

linear way to talk about this. i can't even comprehend that. but i'm curious about something, allison, because every time-- i've been allison's executive coach, and she takes credit in her communication skills, so every time she's really good at something, she takes credit

for it; when she's not, she blames me. >> ha ha! >> but in all seriousness, you've always...when i've met with you professionally and socially, you've always seemed to be pretty upbeat and positive. how much of that

is a conscious decision to be an upbeat, positive person, and how much does that change as you get close to the 6-month time where you have to go in and do what you need to do? >> that's a great question. all of it? >> i don't have any answers.

i only have the questions. >> all of it. it's a choice every day. >> every day. >> it's something we think about every day. it never does not cross my mind on a daily basis. as it gets closer to the 6 months, certainly--stan, what

do we call it? >> pmr? >> pms. post-mri stress. >> hold on. i got to get this right. >> pre-mri stress. >> what is it again? >> they coined a term. as the patient gets closer to coming

to see me in the office-- although she loves coming to see me. >> i do. >> and getting their mri scan, that mri scan is frightening for them. it's going to give them the answer, is it there still? is it bigger? is it smaller? is

it the same? i don't know who coined it. i don't know if it was patty, my nurse, who's the backbone of what i do. >> sounds like rebecca. >> but they call it, she calls it pms, pre-mri syndrome, where people start to get anxious and nervous.

>> because you've been doing it for so many years, is it any easier? >> what do you tell--i'm curious because you do help so many others. my producers told me that you actually--do you pick up the phone and call people who have brain tumors, and how

do you even know who to call? >> we're kind of laughing because we just had a tragic situation with a dear friend of mine whose 5-year-old was diagnosed with a brain tumor over labor day weekend, and i got a call from a person that you and i both know, and it's

amazing how the brain tumor community reacts. joe was on vacation, stan was two days away from surgery, yet i had no problem and didn't feel at all that i was being intrusive to reach out to them and get in touch with them to see where this poor child could be treated

and where the parents would be able to take them. so to me, it's all about paying it forward. if there's something that i can do to help someone make their life easier, and that's what we do with the support group, in such an awful, awful time, at diagnosis,

when you really just don't know what to do. it's such a surreal feeling. so it was really calming for me, when i look back on it, to think that out of this craziness, to be able to interact with people who knew exactly what i had been going through--you know, that really

helped with a lot of comfort. so i absolutely am committed and passionate about making sure that i can do whatever i can. >> stan, your son matt, from what i understand, and correct me if i'm wrong, one of the things he said to you was that he wanted to make sure that

you continued to do this work and be there for others. is that a fact? >> yes. well, he didn't tell me. he told my wife virginia. >> what did he say? >> they used to go on the bus trips to atlantic city because he liked to gamble, and she said

on a couple of trips-- >> by the way, what was he like? other than he liked to gamble. >> physically? >> what kind of person was he? >> oh, it's...well, first of all, redhead, 6' 3". really nice guy, if i have to say so myself. he loved sports. he was a new

engineer. >> where did he go to college? >> syracuse. >> all right. >> and he enjoyed his time up there. he is an avid fisherman. he fished like other people work, from the--we lived near spruce run reservoir--from the

time he was about 5 or 6 until he passed away. 3 months before he passed away, we had him wheelchair-axle deep in spruce run. he caught a rainbow trout about 14". i mean, he was an avid fisherman. a nice guy, i think. >> what did he ask his mom?

>> he said, "you know, i think it'd be a really good idea if you and dad could try and keep the group going for a couple of years, at least." he said, "you know, these people really get it, and i've enjoyed the time with them." >> the support group.

>> yes. he said, "as strange as it sounds, they're like family," and that's the way we've tried to work it. it's like a humongous family. >> this is the guy who said, "i'm not a support group kind of guy," right? >> yeah. that's the guy.

>> ilana, let me ask you a question. i know there's no clinical way to measure this-- or maybe there is, doctor. i don't know. when you're working at kessler with patients who are dealing with brain tumors, have gone through intense treatment already,

how important do you think these support groups are to their recovery? >> i think it's definitely important. it's important for them, and it's important for their families, because just like the patient may feel sort of like no one else gets it,

the families of those patients may also feel that way. and you can certainly see in the faces of the patients and the family members, when they have that support around them and that they have other resources to reach out to, that certainly helps them through their day to

day. they don't feel alone. they feel like, like he says, they get it. someone else gets it. >> go back to the family. to what degree up at kessler do you work with and talk with the families as to how they can help patients? i'm going to come back and talk about the family

equation in just a second. >> our goal at kessler, and rehab in general, is always to get the patient home. we want them to be home and enjoying their family, enjoying their life, regardless of the prognosis, whether it's benign or malignant. so sometimes

our goals are, get them as independent as possible, train the family members in whatever they need to help them get home. for someone who may be-- prognosis isn't quite the same, the goal may be to evaluate them for any sort of specialty equipment and educate the family

on it so that when they do go home, the families can care for them. so the families are very involved. they're updated very frequently about how they're doing. they're invited into the gyms to observe sessions and get that hands-on experience, because even when somebody goes

home, they may still need help, and it's definitely our role to help educate the family as to what they need, whether it's from a cognitive perspective, how to help them with their memory, or from how to help them in and out of bed. so they're very involved.

>> doctor, let me ask you. we've talked to a lot of physicians about a lot of things, including national healthcare reform, which we will not talk about here. at some point, you decided this was the kind of work you wanted to do.

given how that's played out, given the patients you've worked with and the patients you've helped and the patients, unfortunately, you've lost, what is it about this work that causes you to say, this is the work i'm meant to do, "a," and "b," from everything i

understand, because allison and others talk about you, you seem like a pretty special person, so my question is, why is this the work you do? >> i always had an interest in neurology or neurosurgery. i was going to do neurosurgery. i had a position to do

neurosurgery. i'm not a neurosurgeon. i'm a neuro-oncologist. it's a medical discipline under neurology. i decided the only thing about neurosurgery that i liked was brain tumors. >> why? >> because it was--not to put

down other things like back pain or whatnot; it was something where a difference could be made, where what you were going to do was going to have an impact in a major way. sometimes not, but there was that potential. i also was single at the time and said,

you know, i want to have a family one day, and i don't want to wake up when my kids are 6 and i didn't know them when they were 2 and 3. the lifestyle of a neurologist is certainly better than the lifestyle of so i went into neurology, university in newark, and found

out at that time that there was a fellowship called neuro-oncology. so i decided to go to sloan-kettering and study that, and i've been doing it ever since. at jfk, we put together a team of specialists around the country to take care of these patients, including in

rehab. we created a rehab team specifically designed to treat brain tumor patients because they're a unique population. it's a unique disease. >> they're a unique population. >> they're smart. they're savvy. they go online, they look for-- they ask intelligent questions

for the most part. you know, i support that. i tell people, "bring in whatever you print out, and i'll go through it if i don't already know it." >> yeah. >> it's not an easy job. you know, when i got that phone call from patty through allison

about the 5-year-old, that hit me hard that day. it was a day that was upsetting. you got to move past it, you know, but it affects you. it affects you in a difficult way. and i like making a difference. i mostly do that through humor. >> yes, you do.

>> but i've been like that my whole life. >> let me clarify something in the minute and a half we have left. of the 35,000 cases each year of brain tumors, is that 35,000 cases of brain tumors that are malignant or malignant and benign?

>> so, of, like, 66 brain tumors in general, say, is the estimate for 2012. >> 66,000? >> 66,000 is the estimate based on the central brain tumor registry. about 22,000-25,000 are malignant brain tumors. >> ok. so that's the number.

>> yeah. one thing i do want to say is, i don't consider myself special. you know? i have friends--i appreciate you saying that, but i have friends that have different jobs and do different things, and when they call me up and say, "that's great you're doing

this and that," i'm like, "i just do what i do, just like you what you do." >> i appreciate that. you consider him special? >> your patients do. >> that's very nice. >> a few seconds left. last thing you want to say

to folks who may be worried, confused, and don't know here to turn right now. >> i think definitely get yourself into a support group. i would say it takes a village, so round up all your good supporters and find the right physicians in your community

to help you through. >> you've all done a great and important public service, and we cannot thank you enough. thank you, doctor. >> thank you. >> the preceding program has been a production of the caucus educational corporation,

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