hello I'm Andrea Ron and welcome to for our sisters a conversation on breast cancer before we start the discussion I'd like to tell you about the woman to whom this program is dedicat Wilson was a professor of surgery and chief of Surgical Oncology at Howard University School of Medicine she was a highly regarded cancer surgeon known for groundbreaking and Innovative research her personal battle with breast cancer gave her a unique perspective and insight Dr Wilson was a tremendous resource and advocate for women at Howard and the Washington Commun large working with the Howard University Cancer Center Dr Wilson participated in hundreds of community events she spoke passionately to women about the risk of breast cancer and the importance of cancer screenings and because of diligence and compassion countless women received access to preventative care and took measures to ensure their health and well-being sadly Dr Wilson succumbed to cancer last year but as you'll see in our program today her Legacy continues we'll be covering a lot of important topics on our show from family history to patient advocacy so you might want to take some notes we'll discuss the latest breast cancer research and present stories of Hope and healing some cancers run in families and the risk of developing certain types of breast cancer are higher if they're close relatives with the condition for those families genetic testing may be crucial to ear detection and prevention Edith P Wright died of breast cancer in 1982 she was 39 years old her daughters Miriam Wright McKinny and Wendy Johnson were 10 and 21 years old respectively they're both here today along with Miriam's daughter and Edith's granddaughter Jasmine Smith th eir story and learn about the organization they started in th mother's honor the Edith P Ca ncer Foundation we'll also discuss the genetic implications when a family member is diagnosed with cancer va lue of genetic testing Grace anaser is senior genetic counselor at the National Institutes of Health where she provides support for patients enrolled in genetic research programs ladies thank you all so much for being here with us let's start with Edith Wright's wonderful family this is a woman who was 39 years old when she died of breast cancer but Miriam let's start with you how old was your mom when she was diagnosed with breast cancer she was 34 years young so that was in a Time ear uh late 7s um when there was much left to to discover and lots to discover but what did you know as a 10-year-old when your mother died let alone 5 years old wh she was diagnosed did you know what was happening to your mom I did had zero clue it wasn't something that was discussed I knew knew that she was here one year for Christmas in ' 81 and I got Barbies and then in ' 82 I got a coat so that was What's Happening Here MH um and a a a reality a harsh reality really set in Wendy you were the big sister you were a teenager but did you know any more than Miriam did about what was happening to your mom and why um I knew my mom was sick but it was during the time when families didn't talk about things that were negative or bad they didn't want their children to worry at 16 I was concerned with trying to keep up with my friends my mom is like you need to come in here and learn how to cook or I nee Girl Scouts or I have a PTA meeting I'm just not feeling like going and I'm thinking you know take her on your dat you know all those all this as a mom hindsight I realized she was preparing me um and without even saying a word was is there anyone else in your family close relatives who was diagnosed breast cancer or any other cancers that you can remember cousin that have had breast cancer so you know growing up and even as an adult you know you're writing down your family history a thinking about my mom's side you know because she had breast cancer and then one of our family reunions it hit me like I already I know this like why why why am we not putting this on our um Med our uh medical records right started side of the family as well as you get the DNA the genes from both sides of the family so you need to tal about it did you practice brea exams mammograms clinical exams when did you start checking your own breast health right after my mom passed away I started checking again I was the oldest um I had an we had another sister Rhonda um who succumbed to lung cancer um about 7 years ago but we all um started ours early in our 20s mhm MH and Jasmine you're the young granddaughter you didn't even know your grandmot you know that this is something uh par of your family history when did you start practicing breast health early exams mammograms clinical exams yes um I'm 25 years old um and that's how long this Foundation has been running and i' you know I have this family that always encourages you to know your if you feel something say something so as soon as my breast started to develop High School is when I first did se lf breast exam um this year I turned 25 as I said um I attempted to get a mammogram um ended up getting an ultrasound instead but you know we're always advocating for learning about ourselves and and to early diagnosis so your grandmother's Legacy is this Foundation Wendy tell us about fo undation what's the mission the goals um our mission is to provide breast uh to provide support services to families facing breast cancer our mom was 39 so we try to think how how can we let her Legacy live on and that is through household cleaning um transportation services um we have a program for children um who have lost a above one took breast cancer we have health fairs so it's all things within a day-to-day of of any family so that's how we want her Legacy is living on through us and Miriam you're also involved with the Rosemary P Williams mammo day absolutely we've been in partnership with the cancer center for well over years now and we provide breakfast and baskets that's one of our programs and it's to encourage persons who are coming and getting their mammograms that can be a little challenging or scary um to and find out stuff so we provide food baskets activities hugs Smiles jokes music whatever it takes so that they feel more comfortable the things that come to the heart and soul pe rson and Comforts them now we're talking about genetics and family history when did you consider ge counseling you hadn't done it before you're considering it now why now why not earlier I'll start off with that um you know being 62 I'm like I I don't have grand children yet I hope my sons are listening um but uh no I'm kidding but um I she not but um you know what will happen when I'm not here um I know we have our foundation but do we have our history so in the beginning I'll say um 20 years ago it was when healthc care was going through the change you know pre-existi conditions I didn't want my name taged to anything you know if something did happen to me that I wouldn't be be um get help and um so we started working with Howard in um University Cancer Center and um they tried to encourage us to get our um genetic testing and um even Dr l so Wilson um so she is a big Advocate um for our our organization but now um you know I think it's it's time um we need to do a Jasmine is 25 as she said um we don't have grandchildren in our family right now but we need to start it Ja smine can carry it on um you know as being the youngest one in the family all right you want have started but wh at makes these women Prime candidates for genetic testing right so that's a great question so what we know when it comes to genetic testing typically it's not offered to everyone just yet we look for certain sort of red flags or should I say pink flags when it comes to um breast cancer that make us you know a little bit suspicious that there could be a genetic factor involved th e key things is being diagnos noed as a young woman in the 30s or 40s with breast cancer and so I know that Wendy and Miriam's mom was diagnosed at 34 so that alone is a factor sort of a risk factor for caring a genetic variant or mutation is another way we sometimes refer to it you know cancer is typically a disease of Aging people get it as they get olde we we wonder if they they have have some biological genetic reason why they got it young so really that's that's the main reason why it would be recommended what's involved in genetic testing what does that actually mean right right genetic testing involves reading through a chemical sequence of a gene the DNA of that particular Gene to see if everything's in order and nothing's misspelled that's what happens in the lab but they need a sample so it involves giving a saliva sample or a blood sample so there's options cuz I know some people don't like needles um there's also you know you can do a cheek swab um and then it gets shipped to lab for for the the sequencing and looking through the genetic code um but you know genetic counseling is important talking to someone about the th e limitations the risk of testing um so that you're sure it's something that you want to do that the timing is right and then then th interpretation understanding the results is so important so there's a process talking to a provider both before and after um genetic testing and continuously as you want to learn more about these um genetic variants especially if if you test positive how long does it take to get the results yes so typically you know once someone provides a sample and it gets to the lab the results take about 2 to 3 weeks sometimes quicker but on average it's about two to three weeks to get thos results and often women who are newly diagnosed with breast cancer are getting tested especially if they're young or i they have bilateral breast cancer or if they have triple negative breast cancer which is more common in black women an aggressive cancer they'll get the test they they may want to rush it a have it come back quicker because women can make treatment decisions like surgical treatment should I have a lumpectomy versus a mastectomy versus a bilateral Mass sectomy so it's really becoming like integrated into th of of patients we keep hearing about the bracka one and two is that the only mutation you're looking for in genetic testing right so that comes up a lot people know people hear about brca 1 and 2 cuz they were you know the first breast cancer genes that were di if someone has a variant in a breast cancer Gene 50% chance it'll be in brca1 and 2 but there are other genes like the CDH one gene where I work I see a lot of women and men who have cdh1 Gene variants that increases the risk for breast and gastric cancer so im portant to report your full family history of cancer not just breast because it can lead and make us thin other genes besides just brca1 and two so there's almost 20 genes that um are associated with breast cancer so if a woman had genetic testing in the past or man had genetic testing in the past and it was only brca1 and two and it was negative or uninformative they should talk to their provider advocate for themselves to get what we call Gene panel testing where you can se veral genes at the same time um and not just focus on brca 1 and two because we know that's limited now you talked about uh the family history that's a difficult conversation to have uh because in a lot of cultures we don't talk about cancer it's the big seat it's the big seat how do you break through how do you get the information from your family members I know at one point they were talking about at reunions and holidays well who wants to be the Debbie Downer and say who died of cancer at Thanksgiving dinner but how do you get the conversation started ex right well getting the conversation started is through programs like this you you see this program make sure to let your loved ones know that you know y heard and found out information about breast cancer I think it's just important to like integrate everyday conversation because cancer is a very common disease um you know 133% of women will get breast cancer in their lifetime and so it's something th need to destigmatize and and become m open in discussing it because we can save someone's life by discussing um breast cancer and our family history and informing the way you all are informing Jasmine about her risk she needs to know that so that she can start taking care of herself which what she' already getting her screening be that's important because the youngest person in the family was 34 when y mom was diagnosed so other close relatives should start 10 years earlier than that so that's great that you started already Jasmine and th ere is a gene mutation or variant in the family that's the age we recommend women start screening with mammograms and breast M eyes is at age 25 much earlier than most women start at 40 did you want to have that conversation did you want have in the back of your that I might carry this gene were there fears in knowing the the facts I think because we've had these conversations throughout the years since I've been born and we have this Foundation that speaks to to the general public about the different fears too I'm just like we need to know so fears set aside you we need to figure this out so if I feel something I have to speak up and say something we'll we'll deal wit emotions after that but righ need to actually get the fac what what the next steps are all right I think Jasmine summed it up best get th facts be with the next step star ladies Grace Anne Miriam Wendy Jasmine thank you so much for being here with us thank you thank you our conversation continues but first Kimberly Higginbotham understands better than most that breast cancer doesn't play favorites wi young Kimberly was diagnosed wi cancer in her early 20s here's her story the biggest misconception about young women in breast cancer is they think they won't get it I felt the lump but didn't think that it was anything because no one thinks about cancer and 23 year old especially breast cancer I was dating my husband then and I hadn't told him and he hugged me and felt it that just shows you how big that it was I came here to see Dr Lala fall Jr a renowned surgeon at Howard he said well whatever it is we need to remove it he set my mother and I down and said I'm sorry but the tissue came back positive with malignant ce the word malign make cancer I knew the tissue had come from my breast but I just couldn't put two and two togeth just I was just like he can't be me a 23 I have breast cancer so point blank asked him are you saying I have breast cancer he said yes cr ying because I just knew that I was not ready for whatever was happening next my mother said well what what do we have to do now and he said we have to have another surgery ra diation if someone is diagnosed at a young age one of the main things they may be thinking about is their I was told that it would make it harder for me to have childre chemotherapy can decreas eggs that I would produce so th options where some people freeze their eggs before they start their chemotherapy so you have to discuss th with your doctor to see if ther enough time for you to they're also organizations that you pay for that as well and bo dy image wise some of them may not be married so they're concerned about how their breast is going to look even with having a small portion taken th en that means their breast size may be different but you have a th at you'll meet with and then pl surgeon can go over your op shouldn't let any of these things keep us from the treatment that is need help us treat the breast cancer I always had a lingering fear will cancer come back will it come back any little thing that popped up I want you to First tell me it's not th en you tell me what it is but so working at the hospital I'm always running to my doctors and wh at is this can you help me can I get this test can I get all can you te ll me that it's nothing firs 2015 it was something in the other breast I was diagnosed with breast cancer so I was upset because I knew what I was going to have to do but this time it was different because I had children I had to see what I was going to share with them and I was pretty open with them and let them know Well mommy went through this the first time an hair and daddy shaved his hair off for her and he's like Daddy was bald you both were bald so you know we made into like a little joking thing and told him like Mommy may not be able to come to all your game she ma great but dad's going to tell he everything went and your grandparents will be there so I tried to let know that I may be down for a little while but I'll be back because you know Mommy did this before if you find something body that's different don't be afraid to go to a doctor to talk to someone because you may need encouragement to go to that doctor share it to the doctor don't be afraid to go because the sooner you find out if is something the sooner you can st getting a treated or a want to let fear keep us away breast cancer at any age is daunting and for younger women issues around sexuality fertility and pregnanc often concerns after treatment lavel William Smith is a pharmacist and was diagnosed with breast cancer when she was 31 years old she was also at the time what other challenges do younger women face are the guidelines for treatment and screenings of younger women different Dr Jacqueline Gr iffith will provide us some answers she is an assistant professor in department of radiation oncology at Howard University College of Medi and she's also the director of breast cancer in that department and we t you both for being here with us lavel tell me a little bit about yourself did you have any family history of ca ncer um so no I didn't have any uh family history of breast cancer I was actually diagnosed 2 years ago ye ars old um my husband and I have been trying to have a baby for a year and a half uh so in January 2021 we were Overjoyed we were pregnant with a little girl um as a new mom you you try to s in tune with your body um so it was as I was in the shower I realized I had a lump in my breast I brought it to my and my husband's attention and they were like you need to go get this um but maybe about two weeks later I didn't feel the lump anymore um so I canceled the appointment wow uh 3 weeks after that the lump came back um and it was more pronounced this time so I went to the OBGYN and that's when they started um you know kind of routine breast exam to see what it was um and from that point that's when the journey started I had a um ultra a biopsy um I actually had a second lump in my underarm as well that I found um and I was diagnosed with Stage 2B IND ductal induct invasive ductal carcinoma yes ma'am it's a mouthful it is how far along in the pregnancy were you at this point yes ma'am so I was about pr egnant um so at that node involvement they did decide to do chemotherapy while I was pregnant um but the baby's organs were developed so they assured me that you know this would be the the right time to start it um did do the chemotherapy I had a I delivered her early she was healthy um but I did continue with chemotherapy uh my herceptin therapy and then I also decided to do a double mastectomy with reconstruction as well um lavel you've the joy of having this baby bringing this life into the world where you're now fighting for your own life ta to those moments away from your husband away from your family maybe in the shower what was going through how were you dealing with this diagnosis while you're trying to bring a healthy baby into the world yes so first diagnosed my first reaction once it really sunk in that I had breast cancer uh was was my baby going ok ay um and it was with uh rallying the troops of sorts with Howard with all of my care um they made sure that ma sure the baby was healthy was going to be a priority so I did h where you know I was in the shower and just kind of broke down know why me like what was the reason behind it um and I think it's for Education you know taking this experience and sharing it with I think it was the the reason behind it why did you want to share it with others yes ma'am so because of my age and th lack of uh you know family history with breast cancer I had a lot of female friends who weren't doing self- brea exams who didn't have family hist as well um but I wanted to share that information and let them know that early detection is key early de always be the key it determines the treatment uh philosophies that you follow one in 3,000 women diagnosed with breast cancer are also pregnant at the same time the treatment that la received is that normal chemo and putting off surgery protocol when you're di with breast cancer while you're pregnant it depends on at what stage yo you're diagnosed where you are in your pregnancy I guess I should say so surgery can be done at any point in pregnancy whether you're in your trimester second trime trimester because typically the anesthesia is not going to th e baby chemotherapy second or third trimester because because during the first trimester baby is still forming it parts and yes chemotherapy can cross into the placenta and cause damage to the baby so if we can delay giving chemotherapy into at least the second or third trimester we will do that but depends on the stage of cancer as well so in level's circumstance she said s was a stage two when she was diagnosed the good thing is she was already in the second trimester of her was at 5 months because she had the lymph node involvement and her t T was also hormone negative but her septin which is the third receptor that we look at estrogen progesterone and her sept it was recommended that she proceed with chemotherapy to try to shrink the tumor and give her better survival and overall care of her tumor without harming the baby so it was recommended that she have chemotherapy get as far into the pregnancy as she possibly could and then deliver the baby safely so for pati who were diagnosed with an early stage cancer maybe early stage one or early stage two during their pregnancy they could possibly go straight to surgery but because of her lymph node involvement and be erpr negative which we know can be a more aggressive tumor it was recommende that she have chemotherapy and we do know that younger women tend to mo re aggressive cancer so it does determine the treatment and protoc that you follow going forward yes it does it really does so specifically for a pregnant person they can have surgery at any time during the pregnancy if there's early stage cancer if the ca seems to be more aggressive or more advanced stage then we would try to do the chemotherapy and delay surgery to after the baby is delivered and there's absolutely no reason to give radiation therapy during pregnancy so we tried not to do the radiation therapy at all um because radiation therapy ca very harmful right to the baby let me ask you this LVL what was going through your mind but now that you've gone through this procedure how are you now what are your fears now what are your concerns going forward yeah so course my baby's always at the center so one of my concerns was you know her increased risk of getting breast cancer when she's older um so I want to reall drill it in her my mom as well just all the women in my family to make sure they're doing those breast think that would be the the main thing but overall I'm doing good j to take it one day at a time all moms and dads are trying to do the same thing are you interested in any kind of genetic counseling or genetic yes so fortunately um when Dr Wilson was one of my providers um she suggested that I do the genetic counseling um with Howard University um so I was able to complete that um as well so I did find out I did not have the Bara 1 Bara 2 Gene um that's associated with um majority of breast cancers uh so that was a a good experience took a little bit of pressure off of it it did let ask you this doctor while pregnancy is obviously a major challenge during any kind of breast cancer diagnosis youn women who are diagnosed with breast cancer what are unique challeng they face that others who are a little more mature might not be concerne okay so we know that breast cancer diagnosing younger women can be more aggressive so it can grow more tendency um to be a higher grade and it also has a tendency to be triple negative all of which are poor prognosticators if you want to look at it like that so for a younge screening mammograms and self- breast exam and I think young women no one thinks I'm going to have cancer right I'm young okay um the biggest ri factor for breast cancer is having breasts and being female we are seeing it in younger and younger women so right now the screening guidelines allow women who are at low risk to start their SC emphasizing low risk low risk meaning you don't have a family history of breast cancer do n't have um benign breast disease so you're not at an increased risk of developing a breast cancer so women are at low risk can start screening mammograms at the age of 40 if you fall into a higher risk category meaning you might have been exposed to radiation when you a child chest can be a risk factor for developing breast cancer that you have history of breast cancer or atypical cells within your breast that put you in a higher risk category so you can start screening mammograms at are younger age and that would need to be discussed with your physician to determine what age is actually start your mammograms so for young women as LEL was saying it's very important to get the mammograms and to do self breast exams if you feel that there's something going on in your breast if you dete you notice any changes in your skin please bring it to a physician attentio as soon as possible don't delay and one of the other issues with young women is because even Physicians um we perfect and Physicians also don't tend to think of cancer as being a Young Person's disease so often times about patients who go to a physician there's something going on and the physician doesn't guide the patient the way they should be guided and they may ignore the sign symptoms as well so be your own Advocate if you really think there's something going on with your breast it to a medical provider's attention and if you're not happy with the response you get necessarily there se opinion it's your body you have a right to challenge what you know is going on that's not right that's true yes now again some of the other issues we started out by talking a fertility and whatever what are complications for younger women having gone through treatment are they able to uh have other children yeah so fertility is an issue especially in young in women who are still of childbearing age so when you're diagnosed with breast cancer before you get started with a treatment you can meet with a fertility doctor and sometimes we will do egg preservation in these patients especially if they h to get chemotherapy so the chemotherapy they can have their eggs taken and Frozen and then point later after they're beyond the treatment and they still desire to hav children they can have the eggs implanted into their uterus a they can still have children you don't necessarily have to do that but that is an option so we always try to wo team and we would have not only the surgeon the GYN but a fertility doctor involved too to discuss what different options are available to you all chemotherapy won't cause you to lose your fertility so during chemotherapy there are different medications that can be used to try to help preserve fu nction and in younger patients what we have found that you can have chemotherapy and it doesn' put you into a permanent menopa sometimes after the chemotherapy is over the younger you are the is the more likely you will have a period me nstrual cycle will return and then you can still bear children also ho rmonal therapy we don't recommend getting pregnant while you're on hormonal the are hormone positive typically a patient may end up taking a hormone pill for at least 5 years after they finish tr eatment and this is to prevent the breast cancer from coming back or to decrease the likelihood that i people who are of childbearing age and they're interested in getting you can discuss with your medical oncologist coming of therapy and having a child while you're off of the therapy and then going back on the therapy to complete the 5 of treatment so there are op there so breast cancer does not necessarily mean that you will ab le to have children lvll have th ese conversations with yourself with your doctor yes I have um and it actually a really good point that Dr Dore Griffith brings up um you th ere is life after breast cancer um Family Planning is a a big part of you know what's important to my husband and I so I was very happy to you kn that we would be able to start again to try to conceive you know once everything was over but um the the pr pusle it's it's no joke I had to apologize to many women in my family for uh laughing at them when they would have hot flashes um because I Now understand you have your permanent fan somewhere close by how are you though I'm I'm doing very well um I actually recently started going to a support group um at Ho University Hospital um and it's actually been a a godson to be quite honest um I didn't know I needed that type of support um I've always had the support of my family and the support of my you know medical staff and team and things like that but having that support from other survivors and other thrivers and women who are just going through their Journey um it just means more th ink they really understand and your advice to other young women going through what you've gone through woul be to seek out that kind of support yes ma'am definitely seek out that support um do the exams be your patient you know be your own Advocate um if you really think something is going on or if you want to have something checked do n't stop at the first no um you kn get that second opinion now you told u a little bit about the baby girl bring us up to date how old is she what is her name and how is her health yes so her name is El Marie um she actually just turned two in August um she's amazing when she was born we did have her early so she was premature um but ou t of the hospital it it was only up so she's super smart um very kind and I love her so much so says her proud mommy unbiased LV thank you so much for being with us and congratulations on the baby and your health Dr dunore griffi tha you for the good advice if a friend or family member has been diagnosed with breast cancer you may wonder wh can do to help Mark H is President and founder of men supporting women with cancer Mark started the organizati after his mother Gloria was diagnosed in 1992 there are many many concerns obviously when you're dealing with breast cancer again or any life-threaten every guy feels hopeless helpless and fearful that the person they love is going to die I know from when my mom was diagnosed my dad my brother and myself we all wanted to switch places with her the that matters it's similar to real estate instead of location location location she knows you love her you love her you love her and you're going to be you're going to be there be be there empty nesters so there's a lot of factors that go into it but nothing mo important than her knowing you're goi to be there fo began in 1992 when I heard words uttered to me at that point your mom has breast cancer I was 29 ye and immediately felt like a little boy who thought oh my God my mommy was going to die the organization men women with cancer grew out of two succeeding nonprofit organizations the first first one was called the Gloria highest and Breast Can named after my mom and the second was called men Against Breast Cancer and from there we morphed into men supporting women with cancer an service that we offer is called Partners in survival I have a book that ca lled a guy's blueprint to caregiving and what this book is it's a blueprint it's modeled after the don't sweat the small stuff series and what I the most most proud of is this book is not me talking it's all the families I've met across this country when we first started developing our Wor some focus groups at John's Ho were with uh eight married couples is people think men aren't good caregivers it's quite the opposite when given the opportunity Men Are Great caregivers s what happens is each man was asked to grade himself as a caregiver and conversely then asked to grade him each man gave him a lower grade than his wife gave so you kind of extrapolate that into real life the guys don't realize that the woman they love doesn't again doesn't want us to fix i us to be there it's to know that I can just pull up a chair next to you and put my arm arou and that's all you wan particular time if a caregiver then she can focus on her treatment and the outcome is going to be better because she knows going to be there for her by and she can count on that pe sometimes it's crying with them and sometimes believe it or not not ar guing cuz if you have an re spectful argument she may say oh hey I must be doing okay because we're having a little argument so this is go od with that I always like to end when I'm giving a speech or doing a workshop with a quote by Martin Luther King that I think applies to this Above ev erybody can be great because everybody can serve but only takes a Heart fu grace and a soul generated by love so what that means is be there for someone you love and you make it th em you make a difference for other people the treatments have stopped your hair has grown back the radiation burns are healed and your energy levels have returned to normal you are now considered a long-term Survivor what will your life look like going forward thma Jones understands this process from personal experience she's an award-winning Community activist cancer survivor and advocate and she is the board chair and founder of the Thelma D Jones breast cancer fund Dr Sarah Horton is the executive director of access and diversity for Quantum Le healthc care a nonprofit focusing on breast cancer clinical trials DR Horton Works to improve minority representation in cancer clinical trials she is also a medical oncologist for the Howard University Cancer Center transdisciplinary breast cancer clinic thank you both for being here with us them I'm going to start with look fantastic the picture of survivorship but you call yourself thriver and a warrior what's the difference thank you the difference between a thriver and a warrior is a thri is someone you sort of think about when they're dealing with uh metastatic breast cancer as opposed to a Survivor that's gone into remission but a thriver the cancer is still active as it is in someone who's metastic and so you keep pushing forward each day given the circumstances that you dealt deal uh you're dealt with when you think ab always think about a person who's fighting when you're in a battle survive you know there's that competition you always want to keep pushing even harder you want to use is all the Courage the strength The Valor the honor everything to really win the fight against cancer and you're in it to win it for sure you have been as I said A thri and A Survivor but you've always been a community activist a community Dynamo how did cancer change you well cancer changed me in the sense that it helped me to understand that if we really want to educate the masses and particular those who are in our marginalized community that it is important to be engaged in the community and to have a relationship um create some trust so that you can help to raise greater awareness and educate people about cancer and in my case particular about breast cancer because um the statistics about African-American or black women is just dismal and I live in a community in Southwest D.C where I have a wonderful relationship with the community um in part because I've lived there and I've worked closely with the community to build trust you have your hand in almost every aspect of uh Community involvement you could find in that area of Southwest and I'm still working tr ying to get those patches that are not there because the the community is ever evolving you know that's the home of where urban renewal was and there are elements of the lack of trust is still ex uh existing and with the Southwest Community changing drastically it's still important to be reminded that it is a Community where we have um more people um there's a greater concentration of public housing in Southwest than in any other community in um the District of Columbia so when you have um a concentration of Public House there are a lot of challenges and it's so important that I continue to maintain a good relationship because breast cancer is one of the challenges in my community and it's just importan raise awareness about breast cancer you're a perfect role model because we're talking about long-ter survivorship but when di looking over your shoulder bein about cancer breast cancer coming back after you now that's a really good question because um when I think more about it I haven't really stop looking over my shoulder and it's in part because uh new language is coming out about um breast cancer and so when I was di first diagnosed as um a late stage 3B herto positive which is an aggressive form of breast cancer and it was rare rare according to my doctor that in this country when 95% of the women are diagnosed with breast cancer doctors know the source of the origin however I was at 5% that we didn't not know that and at the time um I was never told stage 3B was considered metastic and now when I'm reading a lot of material and I remember the first time I read that I was stunned because I know a bit about metastatic breast cancer and that was just very alarm and it's like am I now metastatic um so this is why it's important to keep reading and keep sharing your story um so that we can deal and be aware of the changes that are occurring that it particularly can impact our bodies I want you to shar one thing before we get to DR Hort talking about the importance of clin trials you're an advocate for detection and prevention but people may be surprised to learn that when you first noticed symptoms in your own body you ignored them I did why I really did and that's a good question and and I'm happy to share that because um I was very busy at the time which is too busy to take care of yourself exactly um I had just retired from the World Bank Group after more than 33 years an like I could finally Excel and part of my retirement was to go to Santan cadica to study Spanish and of course and when just a day of uh from when I was about to depart I felt this lump beneath my arm and I was like oh I'm going to have to check that out when I get back and I knew about finding feeling and identifying the lump in your breast but I never knew that one of the signs was a lump beneath your arm okay and so of course I went to Santana to study Spanish for about a month and I would feel the lump and I'd al when you get back you should check it out but when I returned five days l five or 10 days later I was off on an international another trip to Guyana and I would fill the blump bin and I'd tell myself oh this thing's getting a little biger feeling different you need check it out I returned and from December to March I still did three other trips and I each time I kept telling myself I should do something about it but I'm at a family reunio conference in Philadelphia I'm showering and the lump was very large and hard and I said couldn't ignore it f me you need to get this checked out well thank God you got it checked out and that you're here with us DR Horton heari still kind of put things off either they don't want to know it or they're too busy is that something y before unfortunately yes um and I understand uh you know we're busy and for a lot of different reasons be it family or work and I know when I was treating patients um there were many times when we would get a patient who was referred and we would go through all these discussion about how serious this is this diagnosis of cancer uh but sometimes you could see in their face and they're thinking and they're about you know I have a job maybe no one's there with them listening to this and you know more often than not before we had patient Navigators you know we would lose patience that way um and by that I m that the patient may leave and never come back for a follow-up visit and then in those instances ultimately they'd probably show up a little later of course the disease had gotten worse maybe we had lost an opportunit some cure of Works some treatments that would have taken this cancer away so um that became a focus uh when we were at especially at Howard um because a lot of the women that we treat are women who are very busy yes a lot of times there are women who may not have resources to take time off of work um have someone take care of their children and so you know there's um there was just the necessity to put together this team which is amazing and Howard with a patient Navigator with um you gr oups like Thelma's groups and Community engagement and uh patient ad advocacy groups that kind of swoop in and and you know the Edith Williams group who come in and help support th the patients to stay not only you know with the diagnosis is but throughout their treatment because not only is important for early detection but it important to follow through with the treatment so that you can of outcome that you'd like before we run out of time I want to get to the importance of clinical t of uh Thelma Community engagement is getting people to understand the importance of clinical trial why do we need representation of all kinds especially in the black community in a clinical trial what difference will it really make well I think we kn hope we know since Co that um the only way that we're going to find out some answers to some of our scientific questions and by that I mean why some drugs work in bodies and why some don't is if people are on clinical trials and and it's a volunteer effort so no one forces anyone to be on a clinical trial in the United States but it's um it's way for us to find out information so that we can move science forward identify drugs at work that work better than what we have now um and that are safe and effective and don't cause a lot of side effects that's kind of our goal and the only way that we can identify these therapies is through a a research test and that's what we say when we say clinical trial it's um it's a research study where we are using patients to look at the best that we have and compare it to something that we think is even better and so I know that a times patients are very um um suspicious sometimes they don't think they're getting the drugs or they don't be guinea pigs even if they so how do you get around what's your pitch to get that person convince with the help of a community engager like Thelma to come in and be a part a clinical trial one of the things that we're doing is we are um trying to make the language that we use when we talk about clinical trials uh in a that people understand so that when we start talking about this wonderful opportunity um the person who's hearing it the patient understands the importance of it they understand that they can leave the study anytime they want they understand why it's go benefit them that this is an ex a drug that could um be better for their disease than what we have right now and they're getting it before anyone and that you're being watched so close that the FDA is monitoring the study so there are a lot of benefits on being on a clinical trial that I think that people don't necessarily unders think there's kind of that concept that it's it's an experiment that you know someone's in a room by themselves you're just kind of given this they've heard the horror stories from the past exactly FMA how do you make yo how do you get them to understand that this is important and that they could be making treatment game-changing treatments by being a participant in a clinical trial um I think do or think would be helpful is to come up with some Jingles cuz Jingles Jingles yeah I would especially the younger generation um sort of can identify with things like that something like your participation and involvement today is tomorrow's um reason for cure or Better Health and just really pair that with uh some popular artists and help get the message out just as we get the message out about early detection exactly DR Horton last words from you on this possibly being Game Changer when it comes to treatment and prevention the importance again of a clinical trial so I just want to um reiterate that now that we are getting more participation in clinical trials especially breast cancer studies we are starting to identify um changes on a that we can start to Target between women who have breast cancer who are Black versus women of a different ethnicity and we're not all alike but what we're finding is that as a group we might have a higher likelihood to have a certain change uh for example we found out last year that um the the most curable type of breast cancer which is estrogen receptor positive breast cancer um all women were all kind and this study were treated the same and based on a score and then they were followed and they found that for some reason the group of black women did not live as long in 5 years as the Hispanic population the Caucasian population in the Asian so now there's new studies looking at specifically why delving deeper trying to look at the genetics that we know might impact early recurrences and so I think it's a Continuum we've got some ways to go but because these women participated in that study and we were able to identify there's a difference so now we're taking the next step all right so if you're in treatment now talk to your oncologist about possible clinical trials you can take part in and help part of the chan and the Hope in the future eradication of cancer absolutely DR Horton thank you for being with us Delma d Jones thank you very much Community Dynamo and the picture of survivorship thank you again I'd like to thank all of our guests and experts we hope the information re ceived and the stories you've heard have inspired you to take better c your health africanamerican women have a 40% breast cancer mortality the highest of any racial or ethnic group in the United States that 40% represents Our Mothers Daughters Sisters Wives friends people Somebody Loved maybe someone you loved that number also represents the Potential Threat to your own life if you don't take breast health seriously take care of yourself love yourself you're the only one in the world like you and the world needs your unique gifts thanks for watching please check the screen for additional information and contacts I'm Andrea rone goodbye and stay [Music] healthy [Music] [Music] [Music] this program was produced by whut and made possible by contributions from viewers like you for more information on this program or any other program please visit our website at wh.org thank you