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Thyroid Surgery Decision

Gtgtgt ALL THIS WEEK WE HAVE EXPLORED CANCER, ITS HISTORY AND CAUSES, THE LATEST RESEARCH AND THE HOPE FOR A CURE. CANCER TOUCHES SO MANY OF US. MAYBE YOU HAVE HAD CANCER YOURSELF OR YOU KNOW SOMEONE WHO IS LIVING WITH CANCER. AS WE LEARN MORE ABOUT THE DISEASE AND HOW TO TREAT IT, WE OFTEN CONFRONT NEW AND SOMETIMES CHALLENGING DECISIONS. SOME RISK FACTORS FOR CANCER CAN BE INHERITED. MANY HAVE BEEN LINKED TO GENE MUTATIONS OF THE DO WE CHOOSE TO GET TESTED AND WHAT IF THEY COME BACK POSITIVE THERE ARE ALSO MANY DECISIONS ABOUT SURGERY,.

RADIATION, CHEMOTHERAPY THAT GIVE THOSE WITH CANCER MANY MORE OPTIONS THAN IN THE PAST. I AM AMANDA VINICKY. TONIGHT WE EXPLORE THE INCREASING NUMBER OF DECISIONS SURROUNDING CANCER, OFTEN DRIVEN BY NEW RESEARCH INTO THE DISEASE. MUCH OF THAT RESEARCH IS HAPPENING HERE IN CHAMPAIGNURBANA. WE START TONIGHT BY TURNING TO ROHIT BHARGAVA, A PROFESSOR AND RESEARCHER AT THE UNIVERSITY OF ILLINOIS. DR. BHARGAVA, MANY PEOPLE MAY NOT REALIZE HOW MUCH CANCER RESEARCH IS GOING ON IN CENTRAL ILLINOIS. CAN YOU TELL US SOME ABOUT WHAT YOU ARE DOING. gtgt SO WE HAVE WHAT WE CALL A CANCER COMMUNITY.

AT ILLINOIS. THIS IS A GROUP OF RESEARCHERS WHO HAVE COME TOGETHER TO THINK IN WAYS IN WHICH WE HAVE A WHOLE CONTINUUM OF RESEARCH, NOT JUST FOCUSED ON DIAGNOSIS, BUT FOCUSED ON LIFESTYLE, ON PREVENTION,ON NUTRITION AND HOW THINGS GO TOGETHER, RATHER PIECEMEAL ONE THING AT ONE TIME. AND TOGETHER I THINK WE CAN REALLY HAVE IMPACT. gtgt SO AN ENGINEER STUDYING MEDICINE, AND SOMEBODY WHO HAD GONE INTO STUDY MEDICINE MAYBE LEARNING SOMETHING ABOUT ENGINEERING. gtgt THIS IS A FANTASTIC NEW CONCEPT. SO I AM A CLASSICAL ENGINEER, TRAINED AS AN ENGINEER.

Living With Cancer in Central Illinois Diagnoses Decisions

AND NOW WE ARE NOW DOING RESEARCH IN MEDICINE. AND WHAT MAKES THIS REALLY POWERFUL IS YOU CAN BRING IN PRINCIPLES FROM OTHER FIELDS TO BEAR OR BEAR ON NEW CONCEPTS IN MEDICINE. AN ENGINEER’S TRAINING SOMETIMES HELPS YOU MAKE PROGRESS WHERE SORT OF CLASSICAL MEDICAL TRAINING MAY NOT ALLOW YOU TO MAKE THAT PROGRESS. gtgtGIVE ME AN EXAMPLE. gtgt AN EXAMPLE PERHAPS IS AN IMAGING. YOU MIGHT THINK, FOR EXAMPLE, FROM OUR WORK, WE LOOK AT AN IMAGE AS CONSISTING OF MANY PARTS FROM DIFFERENT PARTS OF A SAMPLE. IN MEDICAL PARLANCE, TYPICALLY YOU WOULD FOCUS IN ON ONE ASPECT.

SO IN THE DIAGNOSIS OF CANCER, FOR EXAMPLE, EPITHELIAL CELLS ARE WHERE MOST OF THE CANCERS ARE. 80 OF OUR BODY CANCERS ARISE IN THESE CELLS. SO MEDICAL PRACTICE REALLY ZOOMS IN AND FOCUSES WHAT THESE PARTICULAR CELLS ARE DOING. AS AN ENGINEER, WE KNOW IF YOU ARE IN A FACTORY,FOR EXAMPLE, YOU CAN’T JUST FOCUS ON HOW THE DOORS ARE BEING PUT ON THE CAR. YOU REALLY HAVE TO THINK ABOUT HOW PARTS FLOW IN, HOW THEY ARE PUT TOGETHER, HOW THE ASSEMBLY LINE FUNCTIONS AND HOW THE CAR IS MADE.

SO AS AN ENGINEER, YOU SAY WELL, WHAT OTHER PARTS ARE THERE, AND HOW CAN I ANALYZE ALL THOSE PARTS AND PUT THEM TOGETHER TO HAVE A BETTER UNDERSTANDING OF CANCER. gtgtAND HAS THAT CHANGED PEOPLE’S LIVES, THUS FAR ARE WE SEEING RESULTS gtgt WE ARE SEEING PROGRESS. WE HAVE SEEN A DIAGNOSTIC TEST OR HAVEN’T SEEN A WAY THIS IS APPLIED IN THE CLINIC YET. BUT WE ARE SEEING PROGRESS ALONG THESE DIRECTIONS. gtgtTHANK YOU VERY MUCH. WE WILL GET BACK TO YOU, I AM SURE. WE ARE ALSO JOINED TONIGHT BY A STUDIO AUDIENCE.

WE WILL HEAR FROM THEM IN JUST A FEW MINUTES. ALSO HERE WITH ME IS DR. JOMEL LAYBAYOG. HE IS AN ONCOLOGIST AND HEMATOLOGIST. HE IS ALSO THE MEDICAL DIRECTOR OF PRESENCE UNITED SAMARITAN’S CANCER CENTER IN DANVILLE. BARBARA BELLO IS AN ONCOLOGY NURSE AT PRESENCE. BUT, BARBARA, YOU ARE ALSO FAMILIAR WITH THESE FROM A PERSONAL PERSPECTIVE, RIGHT gtgt I AM. I WAS DIAGNOSED WITH MY FIRST CANCER WHEN I WAS ‘. I HAD BILATERAL BREAST CANCER. THERE WAS NO FAMILY HISTORY, NO I HAD NO RISK FACTORS THAT WERE EVIDENT FOR ME TO DEVELOP.

THE CANCER, AND MY DOCTOR RECOMMENDED THAT I HAVE GENETIC TESTING WHICH I DID. AND I ENDED UP BEING DIAGNOSED WITH SOMETHING THAT IS CALLED P10 HAMARTOMA. AND I AM MISSING A TUMOR SUPPRESSOR GENE. WE ALL HAVE SOME CELLS IN OUR BODY TIMES SOMETIMES THAT WILL START TO GROW TOO RAPIDLY, DIVIDE ABNORMALLY, AND WE HAVE THIS P10 SUPPRESSOR GENE THAT GOES IN AND TELL THOSE CELLS TO STOP DOING THAT. THEY ARE KIND OF LIKE CELLULAR COPS, IS HOW IT WAS EXPLAINED TO ME. gtgt SLOW DOWN. gtgt OKAY.

SLOW DOWN, DON’T GROW SO FAST! LAUGHING SO AFTER I HAD THE GENETIC TESTING AND HAD THE DIAGNOSIS, I WAS ABLE TO GET SOME OF MY GENETIC MATERIAL TO THE CLEVELAND CLINIC. AND I WAS ABLE TO GET MY CHILDREN TESTED, AND THEY TESTED NEGATIVE, THANK GOODNESS. I GET INFORMATION FROM THE CLEVELAND CLINIC EVERY YEAR TO LET ME KNOW WHAT ARE SOME OF THE CANCERS THAT OTHER PEOPLE IN MY SITUATION ARE DEVELOPING, AND IT HELPS ME KNOW WHAT SURVEILLANCE I NEED TO DO EVERY YEAR. A YEAR AFTER THAT, I WAS DIAGNOSED WITH ENDOMETRIAL.

CANCER WHICH IS THE NEXT COMMON CANCER. AND THEN MY WHOLE LIFE, I HAVE HAD MULTIPLE THYROID TUMORS. THEN A YEAR AFTER THE ENDOMETRIAL CANCER, MY THYROID KEPT COMING BACK AND COMING BACK. SO FINALLY I WAS JUST TREATED FOR THAT AS IF IT WERE CANCER WITH RADIATION TREATMENT. AND THE THYROID NOW SEEMS TO BE COMPLETELY GONE, AND AT LEAST IT IS BEHAVING ITSELF. gtgt FINALLY. WELL, I AM THANKFUL FOR THAT. CAN WE TAKE A STEP BACK AND LEARN A LITTLE BIT MORE. FIRST OF ALL, WHAT DOES IT MEAN TO BE TESTED.

GENETICALLY WHAT DOES THAT INVOLVE IS A SIMPLE PROCEDURE gtgt IT WAS JUST A BLOOD DRAW. I WENT AND SAW THE GENETIC COUNSELOR AT CARLE. AND THEY DID EXTENSIVE FAMILY HISTORY AND PHYSICAL EXAM. AND SHE IDENTIFIED THIS PARTICULAR SYNDROME AND RECOMMENDED THAT I BE TESTED FOR IT. AND THEN AFTER THAT, IT IS JUST SIMPLE BLOOD WORK. gtgt AND DR. LABAYOG, CAN YOU EXPLAIN WHO SHOULD BE GETTING THESE SORT OF TESTS DOES EVERYBODY NEED ONE, THEIR CHILDREN, TOO I MEAN WHY NOT gtgt GOOD QUESTION, AMANDA. YOU HAVE TO KNOW INHERITABLE DISEASES OVER THE SPAN OF ALL CANCERS ONLY ACCOUNTS FOR.

ABOUT 7 TO 10. SO MAJORITY OF CANCERS ARE STILL SPORADIC. WE KNOW ABOUT 50 MUTATIONS OR SO, SO FAR THAT ARE CANCER CAUSING. SO IT IS NOT EVERYBODY WHO WALKS IN THROUGH THE DOOR. THAT ONE IN EIGHT PERSON WHO DEVELOPS BREAST CANCER, THEY ARE NOT ALL GENETIC OR INHERITABLE. USUALLY WHAT MARKERS STAND OUT FIRST, WELL, FIRST OF ALL, THERE IS SOMEONE WHO IS DIAGNOSED, USUALLY LESS THAN 45 OR 40 YEARS OF AGE, THAT USUALLY IT IS A BELL TONE. IT TELLS YOU, WELL, MAYBE THAT’S NOT THE AVERAGE AGE FOR THE SPORADIC CAUSE.

AND YOU HAVE TO LOOK. YOU DELVE. YOU GO INTO THE MEDICAL HISTORY. YOU TALK ABOUT FAMILY HISTORY. YOU LOOK FOR THE FIRST DEGREE, SECOND DEGREE RELATIVES AND SEE JUST WHERE THAT COMES INTO PLACE. IS THIS, INDEED, STILL SPORADIC, WHICH IT MAYBE, OR DO YOU HAVE TO DELVE DEEPER IS THERE SOMEONE WHO HAS HAD PROSTATE CANCER, SOMEONE WITH COLON CANCER, SOMEONE WHO HAD EARLY MALIGNANCIES IN THEIR LIFE. THOSE BRING ON MORE QUESTIONS AND USUALLY MORE TESTS IF NEED BE. gtgt NO, I KNOW, BARBARA, YOU SAID YOU HAD YOUR CHILDREN TESTED.

HOW OLD WERE THEY THEN AND DOES THAT MEAN THEIR CHILDREN ARE HOME FREE WHAT ARE SOME OF THOSE DECISIONS THAT NEED TO BE MADE ONCE YOU FIND OUT THAT YOU HAVE TESTED POSITIVE FOR ONE OF THESE GENETIC MARKERS gtgt THEY WERE VERY YOUNG. THEY WERE 11 AND EIGHT AT THE TIME. AND EVEN THOUGH INTELLECTUALLY I KNOW THAT THEY DO NOT HAVE THIS PARTICULAR SITUATION, I AM STILL GOING TO ENCOURAGE THEM TO BE A LITTLE MORE VIGILANT IN THEIR ANNUAL SCREENINGS THAN I THINK SOMEONE IN THE AVERAGE POPULATION WOULD BE.

MY SITUATION, I THINK, JUST HAPPENED WITH ME. IT IS SOMETHING THAT I STILL WANT MY KIDS TO BE AWARE OF, MAYBE PASS ONTO THEIR KIDS AS WELL. WE NEED TO KIND OF LOOK FOR SOME OF THESE THINGS THAT MIGHT BE OCCURRING THAT WE NEED TO INVESTIGATE A LITTLE BIT MORE. gtgt AND, AS I MENTIONED EARLIER, WE ARE JOINED TONIGHT BY DOCTORS, FAMILIES, CANCER SURVIVORS AND RESEARCHERS IN OUR AUDIENCE, MANY WHO HAVE FACED THESE DECISIONS FOR THEIR PATIENTS THEMSELVES OR THEIR LOVED ONES. WE ARE GOING TO HEAR FROM A NUMBER OF THEM.

TONIGHT BEGINNING WITH KEN. gtgt MY QUESTION CONCERNS THE CHANGING GUIDELINES FOR ROUTINE TESTING FOR PROSTATE CANCER OF THE PSA WITH MALES. MY OWN STORY, I WAS GIVEN A ROUTINE TEST 13 YEARS AGO WHICH DETECTED CANCER, LED TO SURGERY. I HAVE BEEN CANCER FREE EVER SINCE. I AM WONDERING IF THAT SITUATION WAS REPLAYED TODAY AT AGE 67, WOULD I STILL BE GIVEN THAT ROUTINE TEST WHICH I FEEL SAVED MY LIFE AND HAS ME HERE TODAY gtgt THE PSA, THE PROSTATE SPECIFIC ANTIGEN CAME OUT IN THE 1990’S, AND IT WAS SUPPOSED TO BE AN EARLY DETECTOR OF PROSTATE CANCER.

AND IN 1990’S, WHEN IT WAS ESTABLISHED, IT WAS SIMPLY A BLOOD TEST, AND IT WAS SLOWLY INCORPORATED INTO THE AMERICAN CANCER SOCIETY GUIDELINES. SINCE THAT TIME, THE INCIDENTS OF PROSTATE CANCER HAS ROSE AND RISEN QUITE A BIT BECAUSE YOU HAVE A TEST THAT CAN DIAGNOSIS IT EARLIER. THAT WAS IN THE 1990’S, AND IT HAS BEEN 20 OR SO YEARS LATER. SO WHAT DID WE LEARN DID WE, IN FACT, REALLY MAKE AN IMPACT IN PROSTATE SPECIFIC DEATH AND REALLY IT IS REALLY HARD TO KNOW THAT FOR SURE. SOMETIMES THERE ARE A NUMBER OF TESTS.

THERE ARE A NUMBER OF STUDIES THAT LOOK BACK AND SAY, YOU KNOW WHAT, I DON’T THINK WE REALLY MADE A BIG BENEFIT HERE. WE ARE EXPOSING INDIVIDUALS AND MEN TESTING TO THE ANXIETY OF THE TEST, MORE PROCEDURES, PROSTATE BIOPSIES, PROSTATECTOMY, BRACHYTHERAPY, RADIATION THERAPY AND CHEMOTHERAPY, UNTIL THIS DAY, WE HAVE YET TO DETERMINE WHETHER OR NOT WE HAVE REALLY MADE A DIFFERENCE IN CANCER MORTALITY. gtgt BECAUSE THE TEST ITSELF IS PAINFUL OR PERHAPS THE TREATMENTS, I MEAN IT SEEMS IF THERE IS AN OPTION TO BE SAVED FROM CANCER WHEN WE.

HAVE SEEN SO MANY PEOPLE HURT BY THIS DISEASE. GO AHEAD, I WILL HAVE A BLOOD TEST, I WILL HAVE A SIMPLE PROCEDURE TO HAVE ME IN PAIN FOR AN HOUR IN ORDER TO SAVE ME FOR A LIFETIME. gtgt THERE IS SUCH A THING CALLED LEAD TIME BIAS. IT IS AN IDEA THAT IF YOU WERE TO DIAGNOSIS A DISEASE EARLIER, WOULD YOU MAKE AN IMPACT, WOULD THEY EXTEND THEIR LIFE TIME OR ARE YOU JUST DIAGNOSING IT EARLIER AND THEY STILL DIE AT A PARTICULAR AGE OR SHOULD WE WAIT FOR SYMPTOMS, AND THEY ARE STILL GOING TO.

DIE AT X TIME. SO LEAD TIME BIAS IS USUALLY A GOOD THING BECAUSE IT GIVES YOU YOU ARE DIAGNOSED WITH CANCER EARLIER, BUT HOW DO WE KNOW IF WE HAVE EVEN CHANGED THE OUTCOME OF THIS DISEASE YOU REMEMBER A PSA, FOR EXAMPLE, YOU CAN HAVE A NORMAL PSA WHICH IS LESS THAN FOUR FOR THE MOST PART, AND THERE IS ALREADY A 15 CHANCE OF COMING DOWN WITH PROSTATE CANCER IN THE NORMAL PERSON, WITH A NORMAL PROSTATE EXAM, A PSA OF FOUR. SO IT IS NOT A VERY SPECIFIC TEST.

ON THE OTHER HAND, YOU CAN HAVE A PSA OF MORE THAN TEN WHICH IS TWICE THE NORMAL. BUT, YET, ONLY TWOTHIRDS OF THE PATIENTS YOU PURSUE WILL HAVE PROSTATE CANCER. SO, AGAIN, IT IS I THINK IT IS A TEST. IT IS NOT THAT WE ARE NOT SEEKING TO FIND THE CANCERS. I THINK BUT THE TEST IS NOT SPECIFIC ENOUGH TO MAKE THAT DIFFERENCE. gtgtTHIS IS THE PROBLEM NOW, RIGHT. SO AS DR. LABAYOG MENTIONED, THE PSA TEST HAS REALLY RAISED OUR AWARENESS. IT HAS ALLOWED US TO PINPOINT A LARGE NUMBER OF PEOPLE WHO OTHERWISE WOULD BE DIAGNOSED.

OR PERHAPS NOT EVEN BE DIAGNOSED WITH CANCER MUCH LATER. BUT NOW WE HAVE GOT A WHOLE COHORT OF PEOPLE WHO ARE NOW POSITIVE WHO TEST POSITIVE ON THE PSA. WE DO A BIOPSY, AND THE BIOPSY COMES BACK NEGATIVE. WE KNOW ON THE AVERAGE HOW THAT WILL BEHAVE. WHEN WE GET DOWN TO THE INDIVIDUAL PATIENT LEVEL, FRANKLY WE HAVE NO IDEA AT THIS POINT. WE CANNOT CONFIDENTLY SAY FOR A SINGLE PATIENT THIS IS THE THERAPY THAT WILL FOR SURE WORK FOR YOU, OR YOU DON’T NEED THERAPY IN SOME CASES IN PROSTATE CANCER, THERE IS A LONG.

LEAD TIME, AND THE DISEASE WON’T EVEN ACTUALLY MANIFEST ITSELF. LET ME ADDRESS ONE QUESTION TO YOU, HERE, BARBARA. I BELIEVE IT IS MY UNDERSTANDING YOU DID CHOOSE I MEAN YOU HAD OBVIOUSLY GONE THROUGH CANCER. YOU’D HAD ALL THESE EXPERIENCES TO HAVE AS MASTECTOMY IF I AM CORRECT. gtgt I DID. I HAD BILATERAL MASTECTOMY. gtgt WHY DID YOU GO THAT ROUTE VERSUS AN OPTION THAT COULD HAVE BEEN LESS INVASIVE YOU COULD HAVE HAD PERHAPS HAD A LUMPECTOMY. HOW DO YOU MAKE THOSE DECISIONS, AND AS A NURSE, DO YOU HAVE ANY ADVICE FOR PATIENTS GOING THROUGH THAT VERY DIFFICULT CHOICE.

Gtgt WELL, IT IS A VERY, VERY CHALLENGING CHOICE. AS A NURSE, I KNEW I WANTED TO NOT HAVE TO GO THROUGH ANOTHER BREAST BIOPSY AGAIN. BUT AS A WOMAN, IT WAS VERY HARD TO THINK ABOUT LOSING YOUR BREASTS. IF I WOULD HAVE HAD TO HAVE LUMPECTOMIES, AGAIN, IT WOULD BE BILATERAL, AND I WOULD HAVE TO HAVE FOLLOWUP RADIATION. I WAS ‘. AND I KNEW THAT I WANTED RECONSTRUCTION, AND I KNEW THAT THOSE IF I WENT THAT ROUTE, THE RECONSTRUCTION WOULD BE MUCH MORE DIFFICULT. SO I OPTED TO HAVE THE BILATERAL MASTECTOMIES WITH THE RECONSTRUCTION.

AND IT IS NOT AN EASY ROAD. I WOULD DO IT AGAIN IN AN INSTANT, BUT IT WAS IT IS VERY CHALLENGING THE FIRST TIME YOU LOOK AT YOURSELF IN THE MIRROR RIGHT AFTER SURGERY, AND THAT PARTICULAR PART OF YOUR BODY IS NO LONGER THERE, IT IS VERY TRAUMATIC. IT CAN BE A CHALLENGING THING TO OVERCOME. gtgt AND PERHAPS ESPECIALLY FOR WOMEN, I MEAN THERE ARE SOME OF THESE DECISIONS, TREATMENTS, TALK PERHAPS. DR. LABAYOG, ABOUT SOME OF THE CHANGES, THE PROGRESSION IN TREATMENT THAT NOW DOES GIVE PEOPLE SO MANY MORE CHOICES THAN PERHAPS THEY ONCE HAD.

Gtgt WELL, AMANDA, WHEN YOU LOOK AT THE NUMBER OF PATIENTS NOWADAYS THAT ARE UNDERGOING SURGERY, IN 1998 COMPARED TO THE YEAR 2010, THERE ARE MORE THERE ARE TEN TIMES MORE WOMEN UNDERGOING MASTECTOMIES, PROPHYLACTIC MASTECTOMIES. BECAUSE THE YEARS HAVE COMBINED, AND THEY HAVE BEEN EDUCATED, AND THEY KNOW WHAT BREAST CANCER CAN DO. AND THEY HAVE MORE CHOICES. WE HAVE RECONSTRUCTION SURGERIES THAT CAN MAKE ME FEEL MYSELF AGAIN. I WANT TO LIVE AS LONG AS I CAN. gtgt I WILL DO WHATEVER I CAN DO TO MAKE THAT HAPPEN.

Gtgt IF IT TAKES MY BREAST, IF IT TAKES MY OVARIES, THEN SO BE IT. BUT NOWADAYS WOMEN ARE MORE AGGRESSIVE TOWARDS THEIR OWN HEALTH AND NOT JUST LOOKING TOWARDS WHAT THE MEDICAL COMMUNITY RECOMMENDS, BUT THEY ARE TAKING IT INTO THEIR OWN HANDS. gtgt NOW WE GO BACK TO A QUESTION FROM THE AUDIENCE FROM DAVE. gtgt I’D LIKE TO TALK ABOUT CLINICAL TRIALS FOR A MINUTE. THERE ARE A LOT OF VERY INTERESTING CLINICAL TRIALS OUT THERE. PHASE TWO TRIALS, PHASE THREE TRIALS, TESTING TREATMENT METHODS THAT ARE OFTEN TIMES KNOWN TO BE SAFE THAT DON’T INVOLVE COMPLICATED PROTOCOLS.

I WISH THERE WAS SOME WAY THAT PATIENTS COULD HAVE ACCESS TO THE TREATMENTS IN AT LEAST SOME OF THESE CLINICAL TRIALS. gtgt SO, PERHAPS, DR. BHARGAVA, DO YOU HAVE ANY EXPERIENCE WITH THAT gtgt NOT DIRECTLY. BUT I THINK IT IS A DOUBLEEDGED SWORD. SO EVERY NEW RESEARCH, EVERY NEW TEST THAT WE BRING, WE ARE HOPEFUL THAT IT WILL WORK. BUT WE ALWAYS HAVE LEFT THOSE TESTS OR THOSE THERAPIES UNDER VERY LIMITED CONDITIONS. WE MIGHT TEST ON CELLS IN THE LAB. WE MIGHT TEST ON ANIMALS. WE REALLY DON’T KNOW HOW A DRUG WILL BEHAVE ON A HUMANS WHEN WE START.

THERE IS ALWAYS A RISK IN BENEFIT TRIAL. AND YOU HAVE TO BALANCE THE BENEFIT TO RISK RATIO. AND THAT’S TAKEN INTO ACCOUNT VERY CAREFULLY IN ENROLLING PEOPLE IN TRIALS AND MAKING IT ACCESSIBLE. THE SECOND ONE IS COST AND AVAILABILITY. NOT EVERY TRIAL CAN BE WIDELY PROPAGATED AND WIDELY OPEN TO PEOPLE. SO WITH THESE TWO THINGS, I THINK MOST TRIALS ARE DONE VERY CAREFULLY. AND PEOPLE TRY TO BE AS INCLUSIVE AS THEY CAN, BUT IT IS NOT POSSIBLE TO INCLUDE EVERYBODY. gtgt WE GO NOW TO SHARON WITH ANOTHER QUESTION. gtgt HELLO.

MY EXPERIENCE WITH THE CANCER WAS THAT MY HUSBAND WAS DIAGNOSED WITH PANCREATIC CANCER WHICH WE ALL KNOW IS A VERY DEADLY CANCER. WITHIN THREE WEEKS OF THE DIAGNOSIS, HE HAD A WHIPPLE PROCEDURE. AT THAT TIME THE DOCTOR SAID THEY THOUGHT THEY HAD GOTTEN ALL THE CANCER. IT WAS ENCAPSULATED. AND FOR FIVE YEARS HE HAD NO CHEMO WHICH THERE WAS NONE AT THE TIME FOR PANCREATIC CANCER, AND HE HAD NO RADIATION. THEN IN FIVE YEARS, THE CANCER CAME BACK. AND AT THAT POINT, OUR ONCOLOGIST SAID THEY HAD DEVELOPED A CHEMO THAT WOULD RETARD THE.

GROWTH. IT WAS JIM SIDIBE. I AM CURIOUS NOW, IN THIS AMOUNT OF TIME, HE DIED IN 2001, WHAT ARE THE ADVANCES IN PANCREATIC CANCER TREATMENT AT THIS TIME. gtgt SO FAR, PANCREATIC CANCERS, YOU ARE RIGHT, IT IS ONE OF THE MOST DEADLIEST. IT IS ONE OF THE RAREST CANCERS WHERE THE NUMBER OF PEOPLE WHO ARE DIAGNOSED IN A YEAR, UNFORTUNATELY ARE THE SAME NUMBER OF THE ONES WHO DIE THAT SAME YEAR. IT IS DIFFERENT FROM LET’S SAY FROM BREAST CANCER. THERE ARE IN ILLINOIS, THERE ARE 9,000.

CASES A YEAR THAT ARE DIAGNOSED HERE IN ILLINOIS. AND ONLY APPROXIMATELY A THOUSAND WILL DIE OF THAT SAME DISEASE IN THAT SAME YEAR. BUT PANCREATIC CANCER, THERE IS ABOUT 1600 WHO ARE DIAGNOSED A YEAR, AND THAT IS THE SAME AMOUNT WHO DIE. THAT TELLS YOU THE gtgt IN THAT SHORT SPAN. gtgt SHORT SPAN. THAT TELLS YOU THE AMOUNT OF PEOPLE DIAGNOSED ARE THE SAME NUMBER OF PEOPLE WHO ARE DYING WHICH MEANS THIS IS A VERY AGGRESSIVE DISEASE. ARE WE TAKING TRENDS ARE WE MAKING STRIDES UNFORTUNATELY, STILL, WE ARE STILL IN THE INFANTILE AGE. WE ARE STILL BEHIND THE TIMES.

WE ARE ATTACKING THE DISEASE AFTER IT HAPPENED. WE DON’T HAVE GOOD MARKERS YET THAT CAN TELL US EARLIER ON WHAT THIS DISEASE IS DOING OR IF IT IS IN YOUR BODY. UNFORTUNATELY, WE ARE STILL LOOKING AT SYMPTOMS THAT OCCUR. AND AS YOU KNOW,WHEN YOU HAVE SYMPTOMS OF A CANCER, YOU KNOW THAT ITS USUALLY VERY FAR ADVANCED. APPROXIMATELY 80 OF ALL PANCREATIC CANCERS DIAGNOSED ARE ALREADY FAR ADVANCED. NOW ARE WE MAKING STRIDES IN THE TREATMENT OF PANCREATIC CANCER CERTAINLY WE HAVE. THERE ARE NEW DRUGS. THERE ARE NEW COMBINATIONS THAT WE HAVE COME UP WITH.

THERE ARE PARTICULAR MARKERS, A SPARK MOLECULE WE CAN IDENTIFY NOW THAT CAN TELL THESE PATIENTS THAT I THINK YOU WILL BENEFIT FROM THESE PARTICULAR DRUGS VERSUS OTHERS. SO ARE WE MAKING STRIDES PERHAPS WE HAVE DOUBLED THE SURVIVAL WITH THOSE PARTICULAR DRUGS. BUT IT COMES AT A COST, TOO. AS YOU KNOW, CHEMOTHERAPY, THERE IS QUALITY OF LIFE ISSUES. THERE IS GOING TO THE HOSPITAL. THERE IS GOING FOR VISITS. THE RISK OF INFECTIONS. SO IT IS STILL A VERY TOUGH DISEASE. UNFORTUNATELY, WE STILL DON’T HAVE A GRIP ON HOW TO BEST TREAT THIS DISEASE.

Gtgt NOW WE HAVE A QUESTION FROM SUE. gtgt HI. MY QUESTION IS I AM BRCA1 GENETIC SURVIVOR. AND IN MY FAMILY, WE HAVE HAD OVARIAN CANCER TO BE VERY STRONG, AND MANY IN MY FAMILY HAVE DIED FROM THAT. MY QUESTION ARE THERE ANY OTHER GENES BESIDES BRCA1 AND 2 THAT THEY HAVE FOUND TO HAVE OTHER KINDS OF CANCERS THAT ARE GENETIC IN THAT LINE gtgtACTUALLY, YES. THERE IS IN AUGUST OF LAST YEAR FROM THE JOURNAL OF MEDICINE WHICH IS ONE OF THE JOURNALS THAT WE USE IN MEDICINE, THEY HAVE IDENTIFIED.

ANOTHER PROTEIN, NOW MUTATION CALLED PALB2. FIRST DESCRIBED IN 2006. BUT WHAT THEY FOUND IN EUROPEAN STUDIES THEY FOUND THIS IS LIKE BRCA1, BRCA2, PERHAPS NOT AS COMMON. BUT, AGAIN, NOW WE HAVE IDENTIFIED ANOTHER MUTATION THAT WE CAN LOOK FOR IN OUR PATIENTS TO HELP IDENTIFY THAT SMALL GROUP OF INDIVIDUALS WHO MAY HAVE AN INHERITABLE DISEASE. AND THE SAME THING, YOU HAVE TO MAKE DECISIONS. YOU KNOW, THAT’S THE ISSUE ABOUT TESTING FOR THESE MUTATIONS IS WHAT ARE YOU GOING TO DO ABOUT IT AND WHAT ARE YOU GOING TO TELL YOUR FAMILY ABOUT IT, TOO.

SO IT IS A FAMILY DECISION. IT IS JUST NOT I HAVE BREAST CANCER. I AM GOING TO CHECK BECAUSE NOW YOU HAVE TO WORRY ABOUT YOUR FAMILY MEMBERS, YOUR SIBLINGS. WHAT IF YOU DO COME DOWN WITH BRAC1 GENE AND NOW YOUR DAUGHTER WHO IS 25 HAS TO MAKE DECISIONS WITH IT, TOO. SO IT IS A FAMILY IT IS NOT JUST ONE PERSON MAKING THE DECISION. IT IS A FAMILY THAT IS MAKING A DECISION. SURGERIES WORK. PROPHYLACTIC SURGERIES WORK. YOU CAN REDUCE YOUR RISK OF OVARIAN CANCER.

IF YOU ARE BRAC1, CARRIER BY UP TO 75 BY 90. YOU CAN YOU REDUCE BY TAKING OUT YOUR OVARIES. DRAMATICIT IS TRAUMATIC IF YOU ARE NOT YET IN A FAMILY WAY. gtgt IF YOU HAVE HAD NOT HAD A FAMILY. IF YOU ARE A 25 YEAR OLD WOMAN, WHO KNOWS THAT SHE HAS THIS MUTATION AND COULD GET RID OF THE POSSIBILITY OF HAVING OVARIAN CANCER, AND, YET, WOULD NOT BE ABLE TO HAVE HER OWN CHILDREN. gtgt RIGHT. PROPHYLACTIC MASTECTOMIES THAT WE WERE TALKING ABOUT EARLIER, THAT’S YOUR CHOICE. REDUCES YOUR RISK BY 50 TO 70. BUT, AGAIN,.

THOSE ARE CHOICES EASIER MADE WHEN YOU ARE 70, HARDER TO MAKE WHEN YOU ARE 30. gtgt IT SEEMS AS IF THERE IS SO MUCH NOW THAT IS AVAILABLE AS AN OPTION TO EITHER HAVE THE GENETIC TESTS OR TO HAVE YOUR OVARIES REMOVED, FOR EXAMPLE, ONE OF MANY EXAMPLES WITH SO MANY OPTIONS AVAILABLE. WHO IS TO KNOW WHICH IS THE CORRECT WAY. DOES ANYBODY HAVE ANY SORT OF ANSWER THAT CAN HELP PEOPLE AS THEY TRY AND WEAVE THAT MAZE gtgt ESSENTIALLY WHAT YOU ARE TALKING ABOUT IS EDUCATION. AND CANCER IS SUCH A BIG PROBLEM NOW IN OUR.

COUNTRY. ONE IN TWO AMERICANS WILL BE AFFECTED BY CANCER DIRECTLY SOMETIME IN THEIR LIFE TIME. THAT’S THE PROJECTED RISK. SO WHAT ARE WE DOING IN GENERAL AS A SOCIETY TO RAISE AWARENESS ABOUT CANCER, ITS EFFECTS, ITS TREATMENTS, ITS CHOICES, AS YOU SAY. AND THE BEST THING WE CAN DO IS EDUCATE. SO WE LEARN WHAT ARE THE CHOICES. WHAT ARE THE RELATIVE RISKS OF THESE CHOICES, AND PERHAPS DECISIONS CAN BE MUCH MORE INFORMED AT THAT POINT. gtgt THE MOST IMPORTANT THING I THINK IS SCREENING. YOU KNOW, RIGHT NOW WE HAVE GOOD SCREENING.

TOOLS. WE DO COLONOSCOPIES. WE DO MAMMOGRAMS, AND THOSE THINGS MAKE A DIFFERENCE. IF YOU LOOK AT THE LIVES SAVED JUST IN ILLINOIS IN THE LAST 20 YEARS, IF YOU LOOK AT THE INCIDENCE OF CANCERS AND HOW SCREENING TESTS HAVE HELPED, IN THE LASTYOU ARE SAVING 7,000 LIVES A YEAR FROM CANCER BY GOING THROUGH SCREENINGS, COLONOSCOPIES, MAMMOGRAMS. YOU HAVE TO REMEMBER, COLONOSCOPY IS JUST NOT EARLY DETECTION, ARE YOU CHANGING THE PROCESS BY TAKING OUT A POLYP, ABNORMAL POLYP, FUNNY LOOKING POLYP BECAUSE THAT’S WHERE CANCERS COME FROM. IF THE POLYP WAS TO SMOLDER AND STAY IN YOUR.

BODY FOR SEVEN, TEN YEARS, THEN THAT COULD TURN INTO CANCER. THAT’S WHY COLONOSCOPIES CAN CHANGE A DISEASE PROFILE BY ITSELF. BUT SCREENING, OBVIOUSLY, RIGHT NOW, THAT’S THE MOST IMPORTANT THING. gtgt BREE HAS A QUESTION. gtgt HI. FOLLOWING THE CONVERSATION OF PREVENTION, I AM INVOLVED WITH AN ORGANIZATION CALLED BRIGHT PINK THAT FOCUSES ON THE PREVENTION AND EARLY DETECTION OF BREAST AND OVARIAN CANCERS. AND THROUGH GETTING SUPPORT FROM THIS ORGANIZATION PERSONALLY, I WAS ABLE TO RECEIVE MENTORING THROUGH ANOTHER HIGH RISK WOMAN THAT WAS ALSO BRCA POSITIVE. THROUGH THAT SUPPORT, I CHOSE TO HAVE A PREVENTATIVE DOUBLE MASTECTOMY WITH THREE RECONSTRUCTION.

I FEEL VERY BLESSED I WAS GIVEN THAT OPPORTUNITY AND THAT CHOICE. SO I WANTED TO ASK HOW YOU FEEL HAVING SUPPORT PLAYS A ROLE IN THE PSYCHOLOGICAL OUTCOME IN THE DECISIONS THAT PEOPLE MAKE IN REGARDS TO PREVENTATIVE SURGERIES. gtgt THAT’S PROBABLY BEST FOR YOU TO ANSWER, ALTHOUGH, OF COURSE, ANYBODY INTERJECT. gtgtWELL, I THINK A PATIENT, ANY POTENTIAL SUPPORT THAT A PATIENT CAN GET WILL JUST BE VERY BENEFICIAL AND JUST TO GET OUT TO WOMEN THAT YOU ARE MORE THAN YOUR BREASTS, AND THERE ARE PLENTY OF OTHER OPTIONS OUT THERE. IT DOESN’T DEFINE YOU AS A HUMAN BEING.

Gtgt WE ARE ABOUT OUT OF TIME NOW, BUT BEFORE WE GO, I WANT TO GO BACK TO DR. ROHIT BHARGAVA. DOCTOR, CAN YOU GIVE US A SENSE WHAT IS AHEAD OF CANCER RESEARCH AND WHAT IT WILL MEAN FOR NEXT GENERATION OF CANCER PATIENTS. gtgt THAT’S A GREAT QUESTION, AMANDA. I THINK WE ARE AT A TRANSFORMATIVE POINT, I THINK, IN CANCER RESEARCH. WE KNOW A LOT MORE TODAY. IN SOME WAYS, WE KNOW THE BASIC ALPHABETS OF HOW CANCER PROGRESSES AND SO ON. IT IS A QUESTION OF PUT THEM TOGETHER INTO WORDS.

AND MAKING SENTENCES OUT OF THEM. WE HAVE AWARENESS AT A POINT IN OUR HISTORY THAT IS THE HIGHEST EVER I WOULD SAY. WE HAVE AN INTEREST FROM THE GENERAL POPULATION FROM OUR SOCIETY IN THIS DISEASE THAT IS TRANSFORMATIVE. THERE IS A LITTLE BIT OF TRANSFORMATION HAPPENING RIGHT HERE IN OUR COMMUNITY. SO OUR UNIVERSITY HAS STARTED A NEW COLLEGE OF MEDICINE. THIS IS BASED ON ENGINEERING AND TECHNOLOGY, AND IT IS GOING TO BRING ABOUT A NEW WAY TO THINK ABOUT DISEASES. AND IT IS A WAY IN WHICH WE ARE TRYING TO LOOK AT THE DISEASES AS TOTAL SYSTEM.

WE ARE TRYING TO TAKE A MULTI FACETED PRECISE APPROACH TO TACKLING DISEASES. PERSONALLY, WHAT I THINK WE WILL SEE AS WE GO FORWARD IS INSTEAD OF ACUTE INTERVENTION AT A POINT AFTER WHICH YOU ARE DIAGNOSED, CANCER BECOMES A LIFETIME MANAGEMENT ISSUE. IF YOU KNOW YOU HAVE RISKS THAT YOU ARE TESTED FOR, SAY, FOR EXAMPLE, FROM SOME GENES, THEN YOU MANAGE THAT SITUATION WITH DIET, WITH LIFESTYLE, WITH PERHAPS SOME MEDICAL INTERVENTION, WITH DRUGS THAT ARE NOT DESIGNED TO ERADICATE CELLS, BUT DESIGNED TO CONTROL THEM IN SOME WAY.

SO IN THIS WAY, YOU REALLY THINK ABOUT CANCER THROUGHOUT YOUR LIFE SPAN, NOT AT ONE POINT WHEN YOU ARE DIAGNOSED AND HAVE TO BE TREATED THAT WAY. SO WE AS A CANCER COMMUNITY ON THIS CAMPUS, WE HAVE A SLOGAN, FROM BENCH TO LIFE. HOW DO WE TACKLE CANCER OVER THE ENTIRE LIFESPAN I THINK THAT WILL BE THE FUTURE NOT ONE SHOT OF INTERVENTION AT ONE POINT WE HAVE TODAY. gtgt AND FROM ALL THESE VARIOUS DISCIPLINES AS WELL. THANK YOU ALL FOR JOINING US TONIGHT FOR LIVING WITH CANCER IN CENTRAL ILLINOIS. PLEASE CONTINUE TO SHARE YOUR STORIES, YOU.

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