Breast Cancer Watch

second opinionepisode 905 breast cancer in young women announcer: major fundingfor "second opinion" is provided by the bluecrossand blueshield association, an association of independent, locally operated,and community-based blue cross and blue shield companies.for more than 80 years, blue cross and blue shield companieshave offered health care coverage in every zip codeacross the country

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welcome to "second opinion,"where you get to see, firsthand, how some of the country'sleading health care professionals tacklehealth issues that are important to you.i'm your host, dr. peter salgo, and, today, i'm happy to welcomedr. brandon hayes-lattin, from the knight cancer instituteat oregon health & science university;our "second opinion" primary care physician dr. lou papa;dr. avice o'connell, from the university of rochestermedical center;

clinical psychologistkaren fasciano, from dana-farber;and geralyn lucas, who's here to share her personal story.by the way, this is a story that our panelists, along with youat home, will be hearing for the first time.so let's get right to work, shall we? geralyn,thank you for joining us. lucas: it's a pleasure. take us back, will you,to the time when you were 27.

i understand that you had adream television-producing job at the competition. yeah, it was really fun.i was leading a really busy life and i was in the shower and ifound a breast lump. so you found this mass.you were 27. what did you do? i told my husband.my husband was a doctor and he called me a hypochondriac,so much to the point where i really did think that i was alittle bit crazy and i

was too young.and then i called my mom and i said, "do we have a history ofbreast cancer in our family?" and she said, "no" and isaid, "have you had lumps?" and she said, "yes."and my husband, to his credit, did say "go to your gynecologistnext time you have to be there and point it out.wait a little while." does this sound like afamiliar story? papa: yeah, i mean, women feellumps and bumps in their

breasts all the time.the big question is if there's something new and there'ssomething different and something persistent,especially beyond a cycle. that's concerning.despite the demographics. remember, now,this is a young woman we're talking about, 27 years old.i mean, it's not something that we really think of as a diseaseof young women, breast cancer. we don't even recommend they getmammography until 40, depending on who you believe, 50.so do young people

get neglected?do they wait too long to come see the doctor?do we, as doctors, wait too long to make the diagnosis? oconnell: well, as the imager to whom,hopefully, she'd be sent, let me say we do wait too long.i think women who are especially under 30 or even under 40,their doctor says, you know, no family history,maybe it's nothing. but because, when we do seethem, they waited quite a while,

i would wish that they would besent at least for an ultrasound. well, i think part of theproblem is the way we look at things, in terms of diseases,is we look at things in terms of public health, right?so you look for the biggest bang, right?so these diseases occur in older people and, unfortunately,that becomes the mantra. every case is individualisticand, unfortunately, we use how common a disease is in a certainage group or a certain race to help us kind of develop our ownpretest probability that they

have something going on.and, granted, even though you're the mammographer, i probably seea lot more of these breast lumps that end up being nothing. most of them end upbeing nothing. absolutely, but it doesn'tmean you assume they're not. and, by the way,that makes us very happy. absolutely. hayes-lattin: as an oncologist, i see theother side of the fence.

so i end up seeing the womanwho's been diagnosed and says, you know, "well,i had this problem and" either "i didn't believe it" or"my doctors didn't believe it," so we definitely seethe other side. pap: let me just throw this outthere because i think that women are getting caught in akind of statistical no-win. which is, from a public healthperspective, "oh, the money is always testing older women"because, if we tested all the

younger women, we'd be spendingmoney on a lot of negatives. but for a specific woman with aspecific lump, that's an n of 1, if you will, it's 100%,if it's you. i really appreciate thatcomment because i think that what was going on at the time --this was, by the way, 17 years ago.there's so much awareness now. there are also younger womenbeing diagnosed who are coming forward.every time i try to do awareness, they say "but it'sonly 5% of the population" --

that's a big number. and if you're that statistic,that is your problem. the other thing i wanted tofollow up on was, you know, 85% of breast cancer is notgenetic, it's not family. so everyone wants to say "well,do you have it in your family?" and then, if you don't,they're willing to say "well, don't worry about it." fasciano: geralyn, what were youfeeling, at the time?

you talked about your husband,but i'm wondering what -- yeah, thank you.and, by the way, just to save my marriage, i have to say --we are in couple's, but just i need to point out that he didsay he wanted me to get it checked out after my next"cycle" -- period -- and, by the way, it didn't go away.there were three lumps and the one that didn't go away wasthe problematic one. i felt completely overwhelmedwhen i felt it and i also felt like i was being a hypochondriacbecause you know what i mean?

and that's so dangerous whenpeople have to trust themselves. i felt i was being too alarmistand i wish i could tell every woman who finds a lump"believe yourself. investigate. nothing wrong can happenif you investigate." i think awareness,"know your own body," would be the biggest message.i think you know what's you. well, let me move thisforward just a little bit. you go to the doctor.what did your doctor say? well, it was reallyinteresting.

it was an appointment where wewere going to talk about getting off the pill, trying to getpregnant, because, when you're young, you're starting yourlife, you're worried about your career, you know, you have allthese kind of beginnings. and i remember i said to her --it was right at the end of the exam -- she did a breast examand didn't feel it. and i think that's a crucialpoint because i think, oftentimes, women can feelthings in their own body that, often, a doctor who's touchingyour breasts maybe once a year,

twice a year, can't feel.so she did the breast exam and then i said "by the way" --it was kind of a "by the way" at the end of the appointment --"i found this lump." and she said "where?"and i actually had to put her hand, it was so deep.and she said, "i feel it now" and i said, "but i don't havea family history." and you know what she said?she said, "i never play games with breast lumps, ever, ever."and i have met so many young women who were told by theirdoctors "come back in 6 months.

it's a blocked milk duct"after they had a baby, "don't worry about it," you know.so thank god. she saved my life. so what did she do? she sent me for a sonogram. all right.i want to stop right there. i'm sure everybody in ouraudience who hasn't had a sonogram is saying"but sonogram? i thought it was supposed to besome sort of mammogram." why a sonogram?

well, she was under 30 so thething is that, under 30, because the breasts are verydense and a mammogram would probably be negative because itwould be so dense that the cancer or the lump or the cystwould look exactly the same as the normal tissue, so we liketo start with an ultrasound on people under 30.in fact, any women with a breast lump, of any age,regardless of the mammogram, they need an ultrasound.but we're not recommending screening ultrasounds on women,in general, but we are

recommending that every lumpgets an ultrasound as well. so under 30, start withthe ultrasound. ultrasound. you had the ultrasound? i did and they were worried.they all stopped talking. the person who was doing thetest kind of, the minute she saw the image, she just got veryquiet and that's when i panicked. can you make thediagnosis of cancer with

an ultrasound? no, never.and, in fact, no matter how worried we look, i will alwayssay to the patient, "listen, we have to do a biopsy,only because there is a chance that it's cancer, but i am in noway telling you i'm sure" because pathology isthe final word. so you got a biopsy? well, before that,i got a mammogram. okay.

and what happened was --it's so interesting. there's so much controversythat they don't work for young women and so this is 17 yearsago and all i remember is the woman who took the mammogramstopped speaking to me and she took out a magnifyingglass and she was looking and looking and i said,"what are you looking at?" and she saw calcifications,which was another strike. all right, so, again,you don't have the absolute diagnosis withoutgetting tissue.

you had the biopsy.what did they tell you? it was amazing because,when they did the biopsy, they saw something.in that room, everyone, again, stopped talking, so it waspretty clear what was going on. how did they tell you thatyou had cancer and what kind of cancer did you have? so my doctor cried.he came back in and he said, "you do have cancer."but then he said, "but we are going to cure you."and i never heard those two

words together and i love thathe said that because it was very hopeful and strange andexciting, in a weird way, that these words could coexist.i thought it was very touching. he was crying, but it alsokind of panicked me. but he was there for me and hemirrored my, you know, anxiety. i actually had a verypoorly differentiated extensive intraductal.they couldn't get clear margins, so it was a pretty aggressiveestrogen-negative, nasty cancer. we'll get into all themedicine, in a minute.

i want to talk to you twobecause you're the oncologist and you deal with the emotionalresponse -- well, you both deal with emotional responses, but --is her reaction typical? fear, surprise,"i'm too young" -- what? all typical. all typicalreactions and, i think, especially for young people,that that's not what you expect. and also, you have no experiencewith what the word "cancer" actually means and all thepossibilities of what it could be, including the fact thatit could be curable.

the reaction that the medicalteam around her had is also sort of typical for a youngadult, but not typical for your average cancer diagnosis.i mean, she's describing providers in tears.so the reaction to somebody who's young, who has cancer --particularly, a cancer that you expect in an older patient --it is relatively typical for a young person, but nottypical across oncology. there are a few things, though,about her story already that are important.one is that she's young.

and we know that breast cancerin young women is more aggressive.not without knowing the details of her case, but, in general,women with young-adult breast cancer tend to have moreaggressive subtypes; tend to have subtypes that aren'tresponsive to hormonal therapy; tend to present, later, withmore advanced disease that's either spread to lymph nodes orspread beyond lymph nodes; and their response rates tostandard therapy, even with the same diagnosis, are less.

also, young women,young people with cancer, in general, tend to have moreemotional distress around cancer diagnoses. yeah. i just wanted to saythat i'm remembering, at the time, i started to cry and isaid, "am i going to have to lose my hair?"which feels kind of vain and silly, you know, but i was 27and i always tell people "it's not vain and silly. it'shorrible to lose your hair." and then i said,"am i going to die?"

and, in fact, 17 years ago, youknow, most of the stories i had heard about women who had breastcancer were not very happy ones. now, i want to stop for aminute and i want to talk about public health, just for asecond, because this is really important.geralyn found her lump doing a breast self-examinationwhile showering. the debate is whether or not weshould be doing breast self-exams at all and there'sa study that showed -- i'd like you to address it --that you don't preserve, you

don't extend lifespan, if i readthe study correctly, by doing breast self-examinations. well, two years ago, we hadthe big controversy about what age to start mammographyand whether clinical breast exam, the so-called cbe, shouldbe done routinely and whether breast self-exam, the sbe,should be performed regularly and the taskforce was kind of onthe fence about the value of both the clinical breast examand the personal breast exam. and i have counseled so manypeople afterwards to say

"listen, you have two breastsand you have your whole lifetime.you need to know what's you." and the same, if you had askin mole and it was new, you'd have it checked.it's like why would somebody tell you not to checkyour breasts? but i think the big issue isfrom a public-health point of view. he hastwo different issues here. one is overall public health.and the issue is casefinding in individuals.so when you look at even

clinical skin examinations,it's unclear. yes, it's a wise thing to do,from a public-health perspective, having everybodyexamine their skin or examine their breastsand the big picture is that does it really extend life?does it really pick up the cancer you have to worry about? but what's the downside?sorry to interrupt. because i've seen these --i've actually like gotten into almost mudfights with, you know,renowned doctors who,

what they come back to me withis almost a psychobabble about, you know, "well, it wouldprevent you from seeing your doctor, if you feel like you'redoing it and you're not" -- i'm going to be much morecold and analytical about it. and some of it's about, yes,you'll get unnecessary biopsies and whatnot, but the biggerissue is there's a certain pool of money for preventativehealth and the question is -- and this is the way i look atit -- about the whole argument is there are other ways we caninvestigate these issues.

if we stay focused on ways thatwe're not sure really translate into reducing death rates orreducing diagnoses of cancer, then we need to tailor thisbecause, right now, breast cancer screening isone-size-fits-all. lucas; right, but if you just say towomen, "know the feel of your breasts," i mean -- what does it cost? what’s the cost? it's not like there's anydownside, at least in my mind.

and also, i think that,when you just said "unnecessary biopsies,"that term bothers me so much. is a biopsy ever unnecessary?is it just cancer or not? but that's not my argument,is that you have these biopsies. my argument is from the biggerpublic-health question, is if we latch on to these things that wethink reduce mortality, that's the big question.you're saying "what harm?" for you, it does no harm.for mrs. jones, that finds a lump and it ends up beingsomething benign, it's not a big

issue, but, if we go down thatpath, that we think that's the way to go, we're notfocusing on better ways. there may be better ways that wecan screen younger women, that we can kind of tailor. yeah, i mean, i'm all forbetter ways, i just think that, right now, unfortunately,so many screenings fail, you have to try everything,you have to do a breast exam. so, from a broaderperspective, in terms of young adults with cancer, whether it'sbreast cancer or otherwise,

there is certainly a powerfulnotion that recognizing that something is different andknowing your body well enough to know it's different,those sort of stories are what we hear on the other sideall the time, so that, i think, is the most important message. but you know that there's agroup of didactic individuals out there that are hardcore, andthey say statistically, it makes no sense. what do they say to me?

they say, "we're very gladyou found your lump,' but you're the exception." but you know what?i wouldn't have had a mammogram because i was only 27. that's two different things. there's a difference betweenfinding something and recognizing that it's abnormal,versus a program of regular either clinician or self breastexams that's scheduled and programmed.that's a screening test,

as opposed to a case finding. all right, but geralyn is27 years old when she finds this lump, which, some peoplewould've said "breast self-exams don't prolong life.don't even bother." people who say that.she's 27, they say "oh, well, wait 'til the routinemammogram," which would be at least 13 years. i'd be dead. that's my point.wouldn't she have been dead?

but her situation isdifferent because -- it's hard to conceptualize this.one of this is from a public-health perspective,looking at millions of people and doing something for anasymptomatic group of people that say "i don't feel anything.i'm fine, i'm healthy." geralyn's situation isdifferent -- she was showering, she felt a lump.that's abnormal. that's a symptom.that's a finding. and that's very different.

but let me engage you onthis, lou, because people are not saying that that's wrong,that that's abnormal. they're saying that there'sno use in even looking. that's what's getting reported. no, this is where things evencross over even with doctors. that's my point. and that’s my point. my point isthat you have an individual who has found a lumpand they meld the screening stuff in their mind, say "well,you know, breast cancer doesn't

occur in young women and wedon't do mammograms." you have a patient that'scoming to you, this is no longer a screening situation.this is a patient of yours that's terrified.they found a lump. you know this -- lumps don'tjust pop up and stay there. that's an abnormal finding.if i had a 27-year-old that came to me and said, "you know, wheni walk up the stairs, i get chest pains and shortness ofbreath and i sweat," i don't say, "well, you know,statistically, young men don't

get heart disease.i'm not worried about it." i'm worried about heart disease.so it's all case-based. so there's two issues here.you have a patient that has a symptom, has a finding, and,unfortunately, we doctors are just as much to blame and we mixin the public-health issues for mass screening. i think, instead of callingit a "breast self-examination," then they think "i don't knowhow to do it," say "awareness." how about say "breastawareness, self-awareness."

absolutely.and it sounds very semantic, but i think it's very important.from my perspective -- i'm not being cold now --my concern is when we get locked in on this.we don't think of terms like there's some individuals thatmammograms are not going to work.maybe there's ultrasounds. maybe there's mris.we lump all women into the same categories. all right, i'm going tohave to pause here,

just for a moment.it's a great discussion, but let's summarize what we'vebeen discussing so far, then we can move forward.all women, no matter what age, need to know their own breastsso they can detect any changes. in young women -- and i'll usethe term we've used here -- breast self-awareness may bethe best screening tool for breast cancer.again, we're talking to geralyn, who's here, diagnosed withbreast cancer at the age of 27. no family history.

no family history,at the time. and you found the lumpwhile showering. correct. after you got the diagnosis,did you tell people you had breast cancer? at first, i wanted tokeep it a secret – why? and i wanted to just wear awig because i thought i was going to get fired.i mean, you have to understand

this is 17 years ago.i thought my work was going to look at me like i was going todie, anyway, i wasn't going to be a player.i thought my husband might leave me.i thought people just wouldn't want to be around me.i was sick. you hit that nailright on the head. yeah, these are very commonfor young people because it also is a point in your life cyclewhere you're still developing your own identity in yourworkplace and your relationships

and you aren't sure how peopleare going to react and how you're going to take that in andhow this diagnosis is going to impact how you see yourself. and we sometimes see patientswho will actually make treatment decisions based on some of thesefeelings, will say, you know, "if that's adjuvantchemotherapy, just in case, i would prefer not to lose myhair, i'd prefer not to risk my fertility.""i'd prefer not to take what may be better cancer therapy,in order to manage these

other aspects.” when your coworkers finally,and your friends, finally found out your diagnosis,what was their reaction and did it surprise you? the office became aplace of support. i went to work every dayduring my chemo. i vomited a lot and i lost myhair and i didn't look great, but i showed up and i hadso much support. i was very lucky to have such asupportive workplace.

after you got the diagnosis,what did you do next? you had the surgery. so after i had the diagnosis,well, that's really funny, that you said "and thenyou had the surgery?" well, you had opinions onwhat treatment you should have. no no no, i know, i know!because this show is called "second opinion"?i had nine opinions. and every doctor was disagreeingwhether i should have a lumpectomy or a mastectomybecause there was a big

movement afoot called"breast conservation," it was like "forest conservation." that’s true. so i had to weighmastectomy, lumpectomy. i also had to go visitoncologists about possible chemotherapies. so what did you choose?what surgery did you choose? i chose mastectomy.well, actually, i chose a lumpectomy.it was all booked.

the night before, i changed mymind and i called my doctor and i cried and i said,"i know it's not like changing a hair appointment.""like there's o.r. time booked and i hope you don't hate me andi made my case" and he said, "you totally convinced me."and he said, "i think you made the harder, smarter decision." karen, help us out here.how do you support these folks who need emotional support andthey're obviously confused. well, i think that, you know,there's all the medical facts

and the recommendations you getfrom your doctors, but there's also part of this that is aboutyou, as a person, and what do you need, in order to be ableto make this decision?" it doesn't have to necessarilydo with facts, but has to do with other people to talk to,who's your support system, how do you feel like you're notmaking this decision alone and that other people aresupporting you in it, what's your own coping style?the reality is a lot of young people andyoungwomen andyoung people who get

cancer in their 20s don't reallyknow even what their coping style is yet, or what the bestdecision is for them and that's a place where, often, they doneed other people, whether that's a mental healthprofessional or a trusted friend or a parent or a spouse or otherpeople to help them say "okay, let's talk about youand who you are. i know how you've madedecisions in the past. i know what's been importantto you in the past. i know how you've dealt withthese smaller crises and what's

been the best way for you to dothat with the most resilience." so i think that those arereally important aspects of this decision. i love what you're sayingbecause i did meet with psychologists, so thank you,and they did help me. and one is in new york,who treats cancer patients, and i also met with someone at thebreast health center where i was diagnosed and had a 3-hoursession, where i basically decided to go from lumpectomyto mastectomy and i just --

it was so criticalto have that support. well, let me justfind out, then. you chose, at the last minute,but you chose mastectomy. and did you have chemo?was that a choice you made? i did. i chose chemo.and, by the way, i cried a lot, deciding about my mastectomy.i mean, it was so sad, the last day with my breast.i mean, this wasn't an easy decision. all right, let's pause foranother moment and let's sum up

what we've been talking aboutand then we can go forward again.cancer treatment decisions are very individual.the cancer patient needs to know all of her choices.having medical, psychological, emotional, personal supportis going to help the person with cancer, as a whole.this is a team effort, isn't it? so let me just sort ofwrap all this up. i'll give you the last word,so just wait. what advice do you folks havehere for young people?

let's say women withbreast cancer. you can touch on anything you like. from my perspective,institutions are beginning to understand how unique breastcancer or cancer, in general, is for young people and we'reseeing the development of programs specifically foryoung adults and so my advice to a young adult is to connect tothat community that has both peer support and expert medicalcare, that knows about the issues for young adults.

karen? my advice would be, both topatients and also to medical providers is to be aware thatyoung adults are cooping with cancer, but they're also copingwith a really difficult developmental stage in theirlife, where there's a lot of changes and a lot is happening,so i think, both for patients and for providers, to understandthat promoting normal development amidst the crisis ofcancer is really important also. and, geralyn,i promised you the last word.

well, i think it's soimportant for people to be informed.before i was diagnosed, i always thought i didn't have a familyhistory and i've had all different kinds of genetic testswhich have told me i don't have the gene, yet, the genethat they know about. since i've been diagnosed,my mother's first two cousins and one of her daughtershas been diagnosed, so there's clearly something in our family.so the last statistic i heard, 1 in 3 americans will dealwith a cancer diagnosis.

most people think of itas someone older. thanks to the great work you'reall doing, we all know young people do get cancer.and i think, when a young person gets cancer, the best thing todo is try to get all the information that's out thereand also talk to your family about their risks becausethey might have a risk. you might be savingother people's lives. well, thank you so much.we're maybe 1/10 of the way through a discussion of thisenormous topic, but the

clock says otherwise.we are out of time. so i hope that you cancontinue this conversation on our web site.there, you're going to find the entire video of this show,as well as the transcript and links to resources.the address is... thanks for watching.thank all of you for being here and you, especially, geralyn.i'm dr. peter salgo and i'll see you next time for another"second opinion." -end-