Breast Cancer Survivors

>> hi. i'm dario cortes. berkeley college believes that all citizens need to be informed about the important issues that affect our daily lives. that's why we are proud to support programming produced by the caucus educational corporation and the partners in public

television. >> challenges for women living with cancer, next on "caucus new jersey." >> funding for this edition of "caucus new jersey" has been provided by holy name medical center in teaneck, new jersey. healing begins here. the russell

berrie foundation. and by roche. >> welcome to "caucus new jersey." i'm steve adubato. now, while many advances have been made in cancer research, it continues to be an ongoing battle for patients and their families. here in the studio to talk about diagnosis,

prevention, and care are our good friend dr. daniel smith, women's cancer specialist at holy name medical center; alexis johnson, breast cancer survivor and a member of the cultural outreach team at gilda's club in northern new jersey; jeanne caldwell, who has

been living with ovarian cancer since 2007; and dee dee ricks, who is a breast cancer survivor and advocate. we recently had her on our "one on one" program. you can check out the hbo documentary called "the education of dee dee ricks," which is on hbo on demand,

right? >> yes. >> an incredible program. by the way, thank you for joining us. the entire half-hour that you're with us, you'll see web site, places where you can get additional information, which will include gilda's club

as well, and also the documentary oh hbo. doctor, i have to ask you. i said to you before we got into the studio. we've done other programs on cancer, but we've never done a program on living, or living well with cancer. what's the difference?

>> the difference is that as a patient who has cancer, you are in some ways expected to live a normal life, yet you're challenged in ways that many people are not challenged. >> be specific. >> people are aware--i just had my 5-year anniversary of being

cancer-free. all my patients know it. they love it. and they love it because--part of it isn't empathy. the goal is to be well, or to feel well. and the course is sometimes very, very challenging. i believe they understood or think that i understand some of

what they're thinking. >> empathy's an interesting word here. living well with cancer. doable, dee dee? >> very doable. you take for granted things--i went to go see my doctor the other day to get the clearance to go to haiti with all the inoculations that

are required to enter the country. and you don't think about the issues of what these chemicals will do to you with having the after-effects of chemotherapy. i say in my documentary that the chemotherapy extends my life in the short term, but

ultimately, it's the thing that will shorten my life in the long term. >> optimistic? >> i think so. >> it's an interesting word when you do a program like this--living well with cancer. "optimistic." and optimistic

about what? >> optimistic that i've beaten it in the short term and will continue to thrive and send a message that just because you're diagnosed with cancer, it's not a death sentence, and that you can live a normal life and a happy life.

>> and also, there are obviously different kinds of cancers, and jeanne, your situation's very interesting. 2007, diagnosed with... >> ovarian cancer. >> which is often called the silent killer, as i understand, because the symptoms are what

they are or very often, people wait too long. it becomes more challenging, and it's a certain kind of cancer in a certain part of our body. you're a 4-year survivor as we do this program. >> correct. i'll have-- >> yes, i'm optimistic, but i also have the reality checks

in my mind. i have never been cancer-free since i've been diagnosed, so i'm living with cancer and i consider myself a chronic patient, just like someone with hypertension or diabetes. >> a chronic patient. >> a chronic patient. it means

that i will have cancer unless a very miraculous or new intervention becomes available, and for the time being, i have to manage the symptoms with chemotherapy. i haven't had to have multiple surgeries. a lot of people have multiple surgeries. fortunately for me,

i've only had two surgeries and i've been on and off chemotherapy for 4 years. it'll be 5 in may, and that'll be my anniversary. that'll make me very pleased. >> make us pleased, too. >> help me on this, alexis. gilda's club, great

organization. by the way, our friend angelica berry, who introduced us to gilda's club, we thank you, because we would not have known of the work that you're doing and your web site will be up. but at gilda's club, you deal with women, disproportionately women, right?

>> all people. >> all people, ok, but with all different kinds of cancers. >> all people, all cancers, yes. >> does it require different care, a different kind of empathy based on the kind of cancer and the kind of person we're

talking about? >> i don't believe so. i believe caring is caring. so who it is directed to--as i said, gilda's is all people. men, women, children, teens, and all cancers. >> and families, too. it's interesting you're saying.

>> family and friends. >> why friends? >> because they're still a support system. they're integral in the >> and the support system is huge, because i want to go back to an interesting part of this, because one, we're talking about

living with cancer, but the other question is, first reaction to knowing that you've been diagnosed with cancer. doctor. >> i was at an important meeting and they were presenting a booklet on cancer, and the... >> before you go any further,

tell folks exactly what your role is at holy name, because i didn't give a full definition of your title. >> i'm the director of gynecologic oncology. >> that puts things in perspective, so go ahead. >> i'm also a general--there are

a lot of things. so i kind of live this. a woman said to the board, "so that if you have cancer, the first thing you're gonna do is you're gonna call us." everybody left, and i pulled her aside and i said, "look, let me give you a hand." i said, "i'll tell you from

personal experience. the first thing you do when you have cancer is you cry. i did. and then i picked myself up and my wife had it all planned out, and everything went very well, but it is--i was not ready to look at the diagnosis. i saw it independently. i had another

operation to do, and i just had to have a moment. >> hold it. another operation to do? you had to perform another operation? >> yeah. yes. >> once you had gotten the diagnosis? >> i was between cases. i pulled

up the pathology. there it was. i read it. just the world stopped. i printed it, erased the screen, and they said, "we're ready," and i said, "i'm just gonna have to partition things right now," and i did. >> the word "partition things."

you have two small children who are in the documentary, right? partition things. do you partition things? >> you have to. when you're-- you've just recently been diagnosed and you have a two-year-old and a 5-year-old at home, and you walk in the

door, they can't know that mommy's been diagnosed with cancer and her life is falling apart. you have to be optimistic and you have to be there for your children. i'm a single mother. so my only option was to go in and, "boys, everything's fine."

>> what'd you say to them? other than "everything's fine." you said more than that. >> mommy has a germ. mommy has a germ and we're gonna have to--anytime you have a germ, we have to go in, we have to fix it and get rid of the germ.

>> and their reaction? >> questions. their nanny had died of brain cancer two years previous to that, and so the word "cancer" was very scary to them. >> partition, compartmentalize things. talk to us about that. your support system is?

>> i have a wonderful support system. i have a fantastic medical team and i feel... >> you're a patient of the doctor's. >> i'm a patient of dr. smith and i have a wonderful team of doctors that--i basically asked one doctor after the other, "who

do you get along with? who do you talk well with?" and they were all handpicked physicians that speak well and engage with each other. as far as compartmentalizing things, i worked for--i just retired last year. i became very ill. >> and your profession?

>> i'm a registered nurse. >> exactly. which is--you know a lot. go ahead. i'm sorry. >> that can be good, and it be a bit scary as well. but last year, my health started to decline, and i had a--like, a major illness, and i retired after 23 1/2 years. and when i

was working, compartmentalizing was very important, because you are not a patient when you are at your job. you're not sick. >> you're caring for others. >> you have to do your job. and you have to consider that number one. that's how i felt. and i always felt more normal

when i was in that environment. >> what about when you came home? >> well, when i came home, i was exhausted and i would just go to sleep a lot, and weekends were just kind of finished. i slept and rested. >> you know what's interesting?

go back to the difference between men and women, and i know that we're generalizing and it's anecdotal, largely, and i'm sure statistics will bear certain things out or not, but women are more--obviously, you're talking about ovarian cancer and breast cancer are

certain kinds of cancers for women that are particularly challenging for this reason-- let me put it out there-- sense of self. sense of being a woman. living well with cancer, with ovarian and/or breast cancer, anything unique with that, being a woman?

>> i'll put it this way. i always knew that i could get cancer. i just never thought i would. most people just think it always happens to someone else. >> intellectually, you knew you could. >> intellectually.

intellectually. and as far as breast cancer is concerned, i did everything right. i never missed a mammogram. i went to the doctor once a year to get a manual examination. i did my monthly breast self-examinations. i played by the rulebook.

and then 4 years ago, just out of the blue, i discovered my own breast cancer. and even though i have no medical credentials, i knew once i saw what i saw, that that was what it was. so i had to come back to new jersey, go to the doctor's office that monday morning, and

she was able to find the lump, and, of course, that's when the medical diagnosis came in, but i knew what it was. >> you knew immediately? >> it was a dimple. and so many people don't even talk about dimples, because all we talk about, read about, hear about,

write about is lump, lump, lump, lump. and this was a tiny dimple that i saw out of the corner of my eye. >> your first reaction? >> i was really at peace. i really didn't become traumatized at the very beginning. i knew what it was.

>> why weren't you traumatized? >> i just knew it was something that i had to deal with. i was capable of doing so. and i thought that i needed to have my wits about me instead of spending my energies on the traumas that are involved. and everyone's reaction is

different. please understand that. but i just decided to stay still, stay calm, and move forward. >> doctor, how much of the living well with cancer is a product of the personality, the attitude, and the core of who that patient really is?

>> i think it's an essential part, and i think that from that essential core, that person will select people who can be supportive. >> go back to the support system. go ahead. >> what do you mean they select people?

>> husbands, wives, friends. they just don't travel with people. >> ok, so assume you're not married, or assume you do not have a--i mean, you did this as a single mom. we all have different situations, right? so assume

you do not have that person day to day in your life. go. >> most people do, and i don't mean have a partner. most people have someone with whom they confide. some it is entirely religious, and some it is part--the church militant. the people around them.

>> ok, let's stay on this. >> can i make a point? >> jump in. >> as a single woman, i was often thankful that i didn't have a spouse, because they go through so much emotionally as well. so in part, it was easier for me, and some of my

girlfriends who had husbands, who were like, "oh, my god. how do i handle this?" and so it was just me, and in some aspects, you're more worried about your spouse than you are yourself. >> but hold on, dee dee. let's make it clear. first of all,

you were working in a professional situation when you were diagnosed. you were making a ton of money. it's part of the--it's not just me, it's part of the documentary. ton of money. living in new york. once the diagnosis happened, lots of things going on, but one

of the things you do is you leave your job. you become a patient advocate. you go to testify down in congress for this patient navigation act, which is critically important. we'll talk about that. and you totally became obsessed with the idea that as hard as it

was for you, there were others who do not have your means financially to get access to the proper health care, and you talk about cynthia dodson in the documentary, who happened to be someone who was struggling financially, who happened to be african-american. you met her.

she died. >> correct. >> and many others you met as well. different support systems you saw. you see today. what advice do you have? because you said for you it was better not to have a spouse.

not everyone feels that way. >> i think this entire group has said it collectively, that every situation is different and everyone has their own mechanisms for coping, and when you're diagnosed with a potentially deadly disease, certain mechanisms kick in

and it's like the survival, and everyone addresses survival in a different way. >> and you became a support system for others. you've become part of a support system for others. can you talk to us about that for you? >> well, a couple years ago, my

family started an organization called mission remission where-- >> mission remission. >> where we had an art-- silent auction where some young artists provided art and then people did a silent auction, and we made donations to 3 organizations. i try to spend

as much time with maureen fund, which is an organization which you've talked about on this program. it tries to educate-- >> because you were with us before doing that. >> right. exactly. tries to encourage women to know the signs and symptoms of ovarian

cancer. i try to educate people as best i can, and i find it really challenging sometimes, and i talk about this all the time--women, when i would try to give them the questionnaires for maureen fund, they would kind of...run away, almost, from it. they didn't want to take it.

>> why? >> they didn't really say. it was just like, "no, no, i don't really need that." but if i approached men and said, "do you have a mom, a sister, a wife, a daughter, someone who you love very much? this could be beneficial," and they would

listen to my story, and they would take the questionnaires and they would send them in, and i found that--just, like, i don't know what that fact means or what it's about, but it's true. and as far as support systems go, and you had an interesting point about, you

know, people around you really-- you want to protect them. and i think that's something that really kicks in when you have children. my mom passed away about a month before i was diagnosed, and my mother was an ovarian cancer survivor, and i felt grateful that she passed

away before i was diagnosed, because i felt like she would feel horrible guilt and it would've just been awful for her. and for me, i want to protect everybody that i'm close to. >> that's just the way you are? >> yeah. yeah. i just want--

>> has that changed dramatically? since the diagnosis--you're shaking your head. why, doctor? it hasn't changed, has it? >> not for her. >> how do you know that? >> it hasn't changed for any of us. i consider myself a very

empathetic person. that i've had cancer changes people's perceptions, but it doesn't, i don't think, really change who i am or what i do. the advocacy thing is a very interesting point. again, you said there are gender issues, and rather than whatever--

but men don't talk a lot about cancer, about anything. and so-- [laughter] >> dee dee liked that. >> so my urologist has asked me if i would be an advocate, so if a man has prostate cancer, he will give that person my

phone number. my patients will sit in the room, and we finish the interview, and she'll say, "elmer, did you talk to him?" and i'll go, "i'm sorry." and it turns out the husband has prostate cancer but is afraid to talk to somebody. >> what's going on there,

doctor? >> a lot. i think the first thing is that men are different. i think that prostate cancer, to quickly generalize, for many people is a very controversial topic. there are many ways of treating it. there are many pluses and minuses. if people

choose surgery for the treatment, the issues are sexual function--dysfunction-- and incontinence, and it is very fearful to men. it's almost more fearful than the cancer. and they don't have anybody to talk to about it, some of them don't.

>> and you--jump back in. >> i'm so glad you mentioned that, because i want to say another word about support systems. >> go ahead. >> most people have a support system. it may not be the same. in my case, it was a husband,

children, neighbors, the church. >> the church big for you? >> extremely. my whole experience was really built on my faith, so that was just totally big. but the point is, we have a support system regardless of what it is. i had always heard of gilda's

club, but of course you don't think about things and it doesn't register with you until you really need it. but i saw a flier in the bag of information that i got from the hospital. i looked at that flier for gilda's club, and i said, "mm, maybe i'll go there just to

check it out." from the moment i walked in that door, i was just enveloped in a sense of overwhelming caring, socially, emotionally, just warm--sense of just emotional healing. >> what'd they do? >> it was just the connection of we are here for you. and i think

it was so important that i was among people that were going through the same thing that i was going through, which my support system was not. your husband, your children, your neighbors and so forth and so on are not going through the same thing you're going through at

the same time. so that's what the big difference was. and i cannot say enough about gilda's club. it is wonderful. >> neither can we. by the say, folks in the control room, do me a favor real quick as we shift gears. put the gilda's club web site up. it is a not-for-profit.

it is there and they're-- >> it is no cost. no cost. >> real quick, can we do this? can we do the patient navigation app, because i promised we'd talk about it, and then we're gonna come back and finally talk about cultural differences, if there are any, in terms of

living well with cancer. real quick on the patient navigation app. what is it, where is it, and why does it matter? >> we're in the process of incorporating patient navigation into the affordable care act, specifically into the exchange languages, because if this goes

through... >> you're talking about national health care reform. >> correct. 50 million americans who are uninsured will have health insurance. so they have to be navigated through that process. >> what does that mean--

"navigated"? >> you have to hold their hand. it's a person from the community that speaks the same language of the patient or person that's been diagnosed in the family and explains to them this is the process, this is the procedure, this is what you're going to be

going through. and it's ultimately about timely resolution of the disease, and if you catch it early, extended care. >> and where is it right now? >> i think we're-- >> don't say it's caught up in politics.

>> we're dead for 14 months. nothing's gonna get done. you know? >> is there not a sense that this is a critically important thing that needs to be done? >> we have an election going on, and it's one of those things where you're looking at yourself

and--i go out now-- >> who's against this? >> it's not that anyone's against it, it's no one will get behind it because we're in an election year, so we have to completely rely on the private sector. and that's the only method of

getting anything done in this country now. >> why don't we do this? we have a sister program called "capital report." i promise you we will get to the politics and policy issues associated within the electoral issue--associated why the patient navigation act is

stuck where it is in washington. can't imagine something being stuck in washington. i'm sorry-- editorializing like that. cultural differences. what do you see in terms of how different people based on their cultural and/or religious background but primarily

cultural differences in terms of living well with cancer, doctor? >> as a physician, i think you have to recognize who the patient is. importing your ideals or decision-making upon them is inappropriate. that there may be differences among cultural groups, however

you're gonna define culture. it's important to understand what that is. and it's important to, i think, to sort of sound the patient out of how they feel they want to be supported. you can give them the medical support, or the surgical, but there's another part of it, and

i think that you need to draw from the patient what--where you need to go rather than telling anyone. >> that's the empathetic part. because i know there's a huge korean population that you're dealing with over in bergen county, and there's an

african-american population, and again, italian-americans happen to be catholic, roman catholic, whatever, and different kinds of people have different issues, but we don't have the time and nor is it our job to describe what we think those differences are, but being empathetic by

asking and trying to better understand is what's most important, correct? >> i do believe so. and i certainly cannot speak for the-- >> about a minute left, so go ahead. >> i certainly can't speak for the african-american community,

but of the people that i know, they just don't want to talk about it. it's still this stigma of the shame, the big "c" still. >> with so many people living with cancer? >> i hate to say that, but from my perspective of the people that i associate with and

hear, that still exists. >> first of all, before we end this program, i just want to say i cannot thank all of you enough for being here, being so strong and powerful and candid and helpful to so many. we're gonna continue the conversation off the air. last thing you want

to say to folks that gives them reason to be hopeful about living with cancer. go ahead. >> well, i think, you know, you can live with cancer. >> the preceding program has been a production of the caucus educational corporation, celebrating over 20 years of

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