Cancer Of The Kidney

>> thank you all for comingto talk on public square today about cancer andconnecting cultures. carmengloria, i'd like tostart with you. talk about why you werereluctant to get screened, and how that finallyhappened. >> well, i knew that beingover 40 years old, i have to get screened, but because ofa lack of insurance, i didn't actually want to doit, because i didn't have any money to pay.but also, it was that i

thought that when they weretalking about breast cancer, it wasn't for me.it's like, they were talking for another people, not tome. i receive an e-mail and iheard that casa de salud, it's a clinic here that washelping you with mammogram for free, so i went to themammogram, and they found there that i have a littlelump, and they did a biopsy. so they actually took like aweek to call me. i decided to go on vacationto new york, so i was

driving there with myhusband on a freeway full of cars everywhere, and ireceived the call from the image center, and she said,i have to let you know that you have breast cancer.just like that. something like a curtaingoes cover, all over. i wasn't able to seeanything. thank god i wasn't driving.so i said, i'm sorry, could you repeat what you justsay? and she said, yes, you havebreast cancer.

i said, but, can youtransfer me to somebody that speak my language?so she said, no, we don't have anybody here thatspeaks spanish, i'm just a receptionist.and i said, but could you tell me how long i'm goingto live? because all these questionscome and say, when i going to die?because cancer is like death for us, it's like death.so she says, no, no, i'm sorry, we don't know yet.probably somebody will call

you to set up a doctorappointment, and i said, but, okay, and i have tohang up because i wasn't able to speak anymore inenglish. it was the worst news that iever receive in my life. so i said, i need to comeback to albuquerque, i need to save my life, i need todo whatever i have to do to be able to survive.and so i called my best friend.it was actually very sad, crying with me.and she said, let me see if

i can help, if i can findsome help. and she found the comadre acomadre program. so i did call elba, and shewas talking to me for three hours.she was giving me all this support.she was telling me, you are not going to die, that it'sall right. i said, but elba, i don'thave insurance, how i going to get treatment?i mean, i'm going faster than anyone, because i don'thave any -- i don't know how

to pay.and she say, don't worry, we will figure it out.it was a very actually important support.it was amazing. somebody was talking to mein my own language about my issue, and somebody wastelling me that, no, everything was done.i mean, that i was able to live more.>> dalila, you are one of the co-founders of comadrewith elba. you're also a survivor.>> i'm a survivor.

it'll be 20 years this june.i had just gone in for my usual yearly stuff, and iended up with having to go and see a specialist.i had to actually go in and have the lump removed, andthen it came back positive. all the news, all theresults, were given to me in her office, it was neverdone by phone. that's when i started myjourney with my chemo and my radiation.>> where did you find support?>> i found a lot of support

with my co-workers.i had a son here and a sister here in albuquerque,which unfortunately didn't have any support.>> your family did not? >> no.>> why? >> i think they were just --my son, i know he had the fear of maybe death for me,which this is what i thought, too, because i hadjust lost my mother three years prior to my diagnosis,from pancreatic cancer. and my sister, of course,probably maybe she figures,

well, if my sister has it,i'll probably get cancer myself, too.i had a daughter who lived in santa fe, butunfortunately i just couldn't see her coming toevery appointment to support me, to be there with me.she would call me and see how i was doing, but ialways told her, i'm fine, i'm fine.>> are you trying to be strong for your family?>> i was. i'm the oldest in thefamily, so growing up i had

a lot of responsibilitybecause i was the oldest. i did work, also, throughoutmy journey. but i was trying to protectmy family, like, it's okay. i just had to find it withinmyself that i could do this. >> did you go to supportgroups? >> i did start going to asupport group. the majority of ladies wereanglo, there was only one hispanic woman.but i just couldn't connect. there was just nothing therethat i could relate myself

to, other than the cancer.>> helen, you also had a diagnosis, and you are asurvivor. >> yes.>> congratulations. >> thank you.>> do either of these experiences sound similar toanything you experienced as a native woman when you gotyour diagnosis? >> in both cases, in boththeir experiences, it's touched me, too, alsobecause of the insurance. contract health couldn'tdecide whether i qualified

or what with the publichealth service in santa fe. but how i came aboutdiscovering is, i was taking a shower, lathery hands, andi discovered a little, little lump in my breast.i waited two weeks. like she said, it's notsupposed to happen to you. it happens to other people.but then i -- it took a while for me to decide togo, and it was like about two weeks, and then i wentto a doctor in santa fe at the public health service,and she sent me for a

mammogram.but nothing came back positive.there was just gray matter, and that i shouldn't worryabout it. but my dad used to say, youknow your body the best, more than any doctor will,so that's what took me back to the doctor, and she sentme to santa fe imaging, and put me through mri.they did a biopsy, and when they told me it waspositive, numb. nothing.you don't have -- i didn't

have no feelings.i wasn't sad, i wasn't thinking of death, i wasjust like, numb. so i went home and wentstraight to my -- i walked into the house, because ilived alone, i went straight to my prayer corner and tookmy cornmeal and i started talking, because my dadsaid, don't ever pray in silence, talk out.and my dad, he passed on. i remembered what he hadsaid, so i said, well, father god, i'm home, youknow the diagnosis.

so i said, you're the greatphysician, and i'm not going to accept this cancer.i can't deny the diagnosis, but i'm not going to acceptthe cancer in my body. so i said, take my hand,prepare me for this battle just like you prepare ourboys for war. i have a war in my hands, isays, i can go through it with you.so that's how i took it, and i said, thank you.i breathed the healing in, and i said, start healingright now.

and i turned around and iwent, whoa, you know. boom, i claimed the healing.i turned around, opened the door, walked to the door andopened it, and said, bye, cancer, out.and i turned around and said, wow, the healing hasstarted right now. so i went about my dailybusiness and getting scheduled.that's what i concentrated on, getting to the doctorfor surgery or whatever, and to learn more about it.>> what are some of the

challenges you guys try toaddress getting people to talk about cancer?>> what we try to validate is, you know what, it's inorder for us to be there for our families and our kidsand our community. we need to be there forourselves. we need to be able to makethat time to get that screening and to reach out.and so here's what we're going to talk about today,how do we do that. >> that's an effective wayto message that for latino

hispanic women who are usedto perhaps putting everyone else first.>> exactly. the other part of that is,the women in the community who are able to feelcomfortable with the women who have cancer, or who aresurvivors, they hear their story and so they'rerole-modeling. there is a woman that theycan associate with, breast cancer and early detection.and the women, themselves, share these stories, and sonow the women leave there

believing and feeling, okay,now i have the knowledge. they watch a video, theypartake in -- we also take part in debunking thosemyths. so there are some myths, forexample, about radiation, getting radiation from themammogram, or what's safe, what's not safe, or, youknow, can i even get one, i have no medical insurance.so a lot of discussion happens in those classes.so that's one of the challenges that we address.and then the other thing is

the emotional support thatdalila said. women need to be able totalk about their experience with other women regardlessof who you are, whatever experience you've had,whether it's even a chronic disease, that you feel,right, that you're with people that understand you,that you're with people that you can trust.so today we have spanish-speaking supportgroups in english. they share and they talkabout spiritual prayer, they

talk about their families,they talk about their cancer, they support oneanother. so that's one of the othercomponents. >> you talked about myths.we have some community health workers from ourpueblo communities, and i want to ask iris and simon,as community health workers, do you encounter that?are there myths about cancer that prevent people fromtalking about it? >> a lot of the nativeamericans or pueblo people

are afraid to go see doctorsbecause we don't want to learn anything bad that ishappening to our health. and one is, everybody hashit the note on translation. you know, when we go andvisit the doctors, we're here nodding our heads.do we really understand what our diagnosis is?us natives, we have prayers that we do every day, and weask for prayers, and we think it shouldn't happen tous pueblo indians. it's not going to come intoour communities.

but it's all over.cancer doesn't pick a person.just it's sometimes genetic, or sometimes just how youtake care of your health. so when ms. bird, when i wasstill working in santo domingo, had come forassistance, i had no clue about what cancer was.we need to get our community health representativeseducated so we can be out there to be in support.we need the resources to help our community members.>> and just to add on to

what iris has said, aspueblo indians, you know, i think we're kind of indenial of our cancer stuff. what i realized in the last10-15 years is that there is an increase of peoplegetting cancer, and as mrs. bird has mentionedabout indian health service, you know, the contracts,there's no funds, people are afraid, people don'tunderstand what cancer is about.there's a lot of people that do have cancer in theirpueblo.

>> and you're saying withihs, the indian health service, the contract,you're not sure what services you're eligiblefor, or there's not enough services?>> there's not enough services.>> there's not enough money. >> there's not enough moneyto go around. in the last, what, 12 years,they did away with a lot of services in the indianhealth service. medical, dental, whatever.and then when you go to

contract for a mammogram, acolonoscopy, whatever, you have to apply, and we don'thave a choice. a lot of people don't haveinsurance. >> are these similar to whatyou're seeing, jean, at zia pueblo?>> yes. we used to have the mobilescome up and have that service provided for women,but now they're on waiting lists.individuals that have insurances, those ones willget in for a mammogram

faster.our chr program has been involved with nativeamerican cancer education, leadership institute, whichcame out of unm. >> that's community healthworker? >> yes, community healthrepresentatives. and we went and we came upwith cancer 101 curriculum. when somebody gets diagnosedwith whatever disease, then we're usually involved to goin and do a one-to-one education.but that's where -- that's

the patient's prerogative.some of our community members don't want theircommunity members, their families, to even know thatthey have been diagnosed with this.they want to tackle it themselves.we're letting them know, it's all right.it's all right to go through the crying, you know, theacceptance. >> let me ask dr. chacon,there are a lot of challenges you're facing.>> in native communities, we

are constantly dealing withwhat we call contract health services or preferred care.whose going to pay for this? how is it going to get paid?so there are many challenges when it comes to cancer, andmany other chronic disease. i think real basic iseducation. as a founder of center fornative american health at the university of newmexico, we began that cancer 101 training, which wastaking modules that had been created in the northwesttribes and modifying that to

southwest cultures,southwest tribes, what we have to deal with here innew mexico around cancer, providing that at thecommunity level, not at the institution, in thecommunity with trainers being chrs.>> why is it important to be at the community levelversus when you have to come to albuquerque to the cancercenter, or to santa fe? >> you're safe.you're home. you're with family.you get to speak what you

want to say.you hope that things are honest and you're at a levelplaying field. when you're at theinstitution, you expect to go there for treatment.maybe sometimes even, i think we feel like you gothere sometimes to get bad news, to die, which is notgood. so bringing this to thecommunity and having people in the community talk abouttheir perspective, their home, they're safe.what's the support?

how can we garner what'shere, cultivate what's here in our community to respondto the needs? >> what i think is sosignificant about what dr. chacon is saying is thatwe find the very similar thing.we bring the classes to where the women are.it's not just, right, the mammogram, but everythingelse that presents a challenge to getting that.and so to have women that look like them, talk likethem, come from that same

culture, in our case we findthat it opens up that discussion so that we'reable to understand what really are those things thatkeep us from, you know, getting screened, or evengoing to see a doctor and understanding that better.>> emily, i want to ask you, this brings me to some ofthe work you're doing right now at unm.we've recorded stories of survivors.why are you doing this? >> we're going through ourlives and we receive our

care at indian healthservice facilities for our whole lives.that's where we go. and i know this for my ownlife, i grew up going to ihs, and we would talkabout, you only go to like st. vincent's to die or toget really bad news, like dr. chacon was saying.so when you're going for cancer, that's completelyoutside your comfort zone. there is a history ofunethical practice in native american communities in theworld of medicine, and this

has kind of trickled downinto the community so that there's a lot of mistrust,and it effects the way people feel about healthcare. so i noticed this in myresearch that there was a lot of mistrust, so ideveloped a program to make these things called digitalstories. they're short three to fiveminute videos where people talk about their ownexperiences of going through cancer and cancer treatment,or family members who had

gone through cancertreatment. and then i took them andplayed them in a native-serving clinic to seeif they changed the way people feel about healthcare, in general, to see if they effected that mistrust.>> do you have any insights yet, or are you stillcrunching the data? >> i'm still crunching mydata. i'm really hoping that theyactually change the way people feel about theirhealth care in general.

but i did find that justgoing through the digital story process, about makingthe digital stories, was a really transformativeexperience, that when people talked about their cancer,when people made their stories, it really made themfeel better about the experience in general.telling your story is important.>> there are still greater incidences of cancer in theanglo community in new mexico, but the outcomesare worse for the

communities of color.>> historically, the rates or the risks of developingcancer are the highest in the anglo population, in thenonhispanic white population, and somewhatlower in hispanics, and the lowest actually in thenative communities. that's changed.something has changed in the last 100 years.now there is cancer here. and although the risks ofcancer overall are slightly lower in the nativecommunities, those risks are

changing.the good news for native communities and hispaniccommunities is that in general, your risk ofdeveloping cancer is less, but the bad news is thatamong people who do develop cancer, they tend to bediagnosed at later stages, suggesting that we're notbeing as effective with screening as we could be.and as a result, probably your chances of dying fromthe same cancers are greater.>> do we know what the --

we've talked about some ofthe barriers. but what are some of thebarriers to getting the screenings or the earlyinterventions? >> like ms. pino alreadysaid, we're not getting the mammogram van coming out tothe communities. there's tremendous distance,and this is true for all rural communities.just getting yourself to a facility that has ascreening available to them is a major barrier.ihs, indian health service,

can't pay for a lot ofscreening, so if you need something that is outside ofwhat they can pay for in one of their facilities, youneed to get contract health to pay for it.contract health is very complicated, and so whatwe've been talking about is signing up, getting on awaiting list, all these things, and that's a hugebarrier to screening. so a pap test, somethingthat you can go into a facility and they can dovery simply, that you can

get, but if you need acolonoscopy, you better get in line.>> and colon cancer is one of the cancers that'srising. >> and another, just to addonto that, we're talking about screening, and wecertainly want to promote screening, but that's notthe end of the story. it's provision of carequickly, and appropriate care, culturally competentcare. >> i think this topicbridges very nicely with the

previous topic about therole of chrs and promotors and community health workersin general, in that as critical as they are in thecommunity, and i think chrs and community healthworkers in general play a primordial role in thecommunity, they also play an important role in bridgingthe gap between some of the fears that community membershave and accessing health care that at some pointinvariably will be needed in albuquerque or santa fe oroutside of the community

setting.and the community health workers, chrs, can play anavigator role in helping community members understandwhat awaits them when they do step outside thecommunity. >> the chrs, thenavigators, the promotors, are all critical in not onlyunderstanding these barriers and challenges, now you'regoing to turn to this health care system and say, hello,can you make these changes, please.>> that's a great segue into

our next segment where we'llstart talking about solutions.so hold tight, we're going to add in a few people andbe right back.