STORY TOOK A SHOCKING TWIST AND THIS MORNING SHE IS HERE TO
SHARE THE LESSONS SHE LEARNED.
MAUREEN BOWSEN AND HER TWO
SISTERS SHARE A GENETIC BOND
THAT IS A BLESSING AND A CURSE.
THE FAMILY HAS AN EXTENSIVE
HISTORY OF BREAST AND OVARIAN
CANCER DATING BACK TO THE LATE
1800s.
1800s. >> MY GRANDMOTHER ACTUALLY
PASSED AWAY FROM OVARIAN CANCER
WHEN SHE WAS 44.
SHE HAD FIVE SISTERS AND NONE
LIVED TO THE AGE OF 50.
MY MOTHER WAS DIAGNOSED WITH
BREAST CANCER WHEN SHE WAS 32.
AT THAT POINT WE REALLY DIDN’T
KNOW THAT CANCER WAS GENETIC.
IT WAS SOMETHING THAT THEY WERE
JUST REALLY STARTING TO TAP INTO
AND THAT’S WHEN MY FAMILY GOT
CONNECTED WITH A RESEARCH STUDY
TO HELP FIND OUT MORE.
>> Reporter: THE THREE SISTERS
GAVE BLOOD AS CHILDREN FOR A
CREIGHTON UNIVERSITY STUDY.
THEY WEREN’T ALLOWED TO FIND OUT
THE RESULTS UNTIL THEY TURNED
18.
18. >> I DECIDED WHEN I WAS 21 I
WOULD FIND OUT.
THE RESEARCHER TOLD ME I
INHERITED THE MUTATION.
WE FELT LIKE WE WERE HIT BY A
TON OF BRICKS.
THE FIRST QUESTION, IS THERE A
CHANCE THIS COULD BE WRONG?
AND THE RESEARCHER SAID NO.
>> Reporter: AT 23 YEARS OLD
MAUREEN DECIDED TO HAVE A
PREVENTATIVE DOUBLE MASTECTOMY.
>> THIS WAS ME BEING EMPOWERED
AND BEING PROACTIVE AND NOT
WAITING UNTIL I HAD A CANCER
DIAGNOSIS.
DIAGNOSIS. >> Reporter: A DECADE LATER,
AFTER GETTING MARRIED AND HAVING
THREE KIDS, MAUREEN ELECTED TO
HAVE A HYSTERECTOMY TO PROTECT
HER FROM OWEVARIAN CANCER.
>> THE FIRST STEP WAS TO GET
RETESTED.
RETESTED. >> Reporter: WHAT THE TEST
REVEALED CHANGED EVERYTHING.
>> IN A MILLION LIVES I NEVER
IMAGINED THIS WOULD BE THE
SITUATION I WOULD BE IN.
>> WELCOME THE SISTERS MAUREEN,
CATHERINE AND BRIDGET.
GOOD MORNING, LADIES.
>> GOOD MORNING.
>> MAUREEN, LET’S START WITH
YOU.
YOU. WHAT SITUATION EXACTLY DID YOU
FIND YOURSELF IN?
>> SO LATE LAST YEAR I GOT
RETESTED THROUGH A COMMERCIAL
LAB AND I RECEIVED A PHONE CALL
THAT I WAS BRCA NEGATIVE.
>> SO YOU DIDN’T HAVE THE GENE?
>>> I DID NOT HAVE THE GENE.
>> SO YOU DIDN’T HAVE TO GO
THROUGH EVERYTHING YOU WENT
THROUGH?
THROUGH? >> NO.
>> NO. HOWEVER, FINDING OUT I WAS BRCA
NEGATIVE WAS IN A WAY ALMOST
MORE OVERWHELMING THAN FINDING
OUT I WAS POSITIVE.
I HAD IDENTIFIED WITH THAT
TITLE, TAKING A PREVENTATIVE
STEP TO AVOID A CANCER
DIAGNOSIS.
DIAGNOSIS. I HAD A MASTECTOMY.
IT WAS VERY OVERWHELMING.
>> CREIGHTON UNIVERSITY GAVE US
A STATEMENT.
A STATEMENT. THEY SAY IN PART, ALL OF OUR
STUDY SUBJECTS HAVE BEEN TOLD IN
WRITING TO GET CONFIRMATORY
TESTING AT A COMMERCIAL LAB.
HAVING THAT SECOND CONFIRMATION
IS SO IMPORTANT.
DID THEY EXPLAIN THAT TO YOU?
>> YOU KNOW, WHEN I GOT MY TEST
RESULTS FROM THEM IN 2008 WE HAD
A VERY LONG CONVERSATION ABOUT
IT AND WHEN THE RESEARCHER TOLD
ME I WAS POSITIVE THE FIRST
QUESTION WAS, COULD THIS BE
WRONG?
WRONG? HE SAID, NO, THAT’S NOT
POSSIBLE.
POSSIBLE. I BELIEVED HIM.
I TRUSTED HIM.
I HAD NO REASON NOT TO.
AND SO, YOU KNOW, THAT WAS THE
DISCUSSION I MADE.
>> YOU GOT RETESTED BEFORE YOU
WERE GOING TO HAVE AN ELECTIVE
HYSTERECTOMY.
HYSTERECTOMY. DID YOU THINK OF GETTING
RETESTED BEFORE YOU HAD THE
MASTECTOMY?
MASTECTOMY? >> NO.
>> NO. I WAS TOLD I WAS POSITIVE AND I
FELT CONFIDENT IN THOSE RESULTS.
>> CATHERINE, YOU ARE THE
OLDEST?
OLDEST? >> YES.
>> YES. >> AND YOU HAD TESTED NEGATIVE.
BUT NOW WHEN YOU HEARD ALL OF
THIS, ARE YOU -- DOES IT CAUSE
DOUBT IN YOUR MIND THAT MAYBE
THERE WAS A MIXUP OR A PROBLEM
WITH YOUR DIAGNOSIS?
>> THAT WAS WHAT WE ACTUALLY
FIRST THOUGHT.
FIRST THOUGHT. WHEN MAUREEN RECEIVED THE PHONE
CALL AND CALLED ME AND SAID I AM
NEGATIVE AND I THOUGHT, WELL,
I’M NEGATIVE.
I’M NEGATIVE. SOMETHING HAPPENED.
SOMETHING HAPPENED. MAYBE THE BLOOD WAS SWITCHED
BECAUSE WE WERE TESTED IN THE
SAME ROOM ON THE SAME DAY.
SO I IMMEDIATELY CALLED OUR
GENETIC COUNSELOR AND WAS
RETESTED IMMEDIATELY AND WAS
STILL NEGATIVE.
STILL NEGATIVE. >> BRIDGET, WHAT DID YOU FIND
OUT?
OUT? >> I FOUND OUT I WAS POSITIVE AS
PART OF THE ORIGINAL RESEARCH
STUDY.
STUDY. I FOUND OUT WHEN I WAS 22.
SHORTLY AFTER THAT I MADE THE
DECISION TO HAVE THE
PROPHYLACTIC MASSECTOMY.
PROPHYLACTIC MASSECTOMY. THE RISK WAS SO HIGH.
IN OUR FAMILY THE ONSET OF
CANCER IS SO YOUNG.
OUR MOM WAS DIAGNOSED WHEN SHE
WAS 32.
WAS 32. FOR ME IT S IMPORTANT TO
REDUCE THAT RISK.
>> AND YOU WERE POSITIVE?
>> I WAS POSITIVE.
>> LET’S BRING IN DR. DEBORAH
AXLEROD.
AXLEROD. SHE DIDN’T TREAT MAUREEN OR HER
SISTERS, BUT SHE IS THE DIRECTOR
AT PEARLRLMUTTER CANCER CENTER.
DOES THIS CALL INTO QUESTION THE
ACCURACY OF TESTING?
>> THERE SHOULDN’T BE A FRENZY
ABOUT WHETHER OR NOT YOUR TEST
RESULTS WERE POSITIVE OR
NEGATIVE.
NEGATIVE. THERE IS, YOU KNOW, LESS THAN 1%
RISK OF HAVING A FALSE-POSITIVE.
YOU HAVE TO GO TO A REPUTABLE
LAB, A COMMERCIAL LAB THAT YOU
TRUST, THAT YOU KNOW THE
SCIENCE.
SCIENCE. THE SCIENCE HAS GOTTEN SO MUCH
BETTER SINCE THE EARLY ’90s WHEN
YOU GUYS WERE TESTED.
YOU GUYS WERE TESTED ON A
RESEARCH PROTOCOL.
RESEARCH PROTOCOL. A RESEARCH PROTOCOL IS NOT
INTENDED TO ANSWER THE QUESTION
OF CLINICAL INDICATIONS FOR
SURGERY.
SURGERY. SO I THINK THAT TESTING YOU
AGAIN WOULD PROBABLY HAVE BEEN
OBVIOUSLY BENEFICIAL FOR YOU,
MAUREEN.
MAUREEN. >> SHOULD EVERYBODY GET A SECOND
OPINION, A SECOND TEST?
A BACKSTOP?
A BACKSTOP? >> IF YOU GO TO A REPUTABLE LAB,
A COMMERCIAL LAB, YOU SHOULD
RELY ON THE RESULTS, ESPECIALLY
IF YOU HAVE A VERY STRONG FAMILY
HISTORY THAT COULD EXPLAIN THE
RESULTS.
RESULTS. WITH THAT SAID, YOU NEED TO BE
TESTED BY SOMEONE THAT YOU HAVE
BEEN REFERRED TO, A GENETIC
COUNSELOR, A HIGH-RISK
SPECIALIST, SOMEONE YOU KNOW
WILL FOLLOW YOU.
EVEN AFTER THOSE RESULTS YOU
NEED TO UPDATE THE RESULTS,
PARTICULARLY IF YOU HAVE A
VARIANT.
VARIANT. AND A VARIANT IN THE DAYS WHEN
WE JUST STARTED TESTING WAS MUCH
HIGHER, MEANING YOU WOULD HAVE
LIKE KIND OF A QUIRKY THING IN
THE GENE ITSELF BUT YOU DIDN’T
KNOW IF THAT REALLY CONTRIBUTED
TO A DISEASE.
YOU DIDN’T ACT ON IT.
WITH LARGER DATABASE, LARGER
FAMILIES, YOU WOULD KNOW WHETHER
OR NOT THAT MUTATION WAS
SIGNIFICANT ENOUGH TO ACT
CLINICALLY ON IT.
WE ASK PEOPLE TO COME THIS EVERY
COUPLE OF YEARS TO UPDATE THEIR
GENETIC TESTING.
GENETIC TESTING. YOU NEED TO GO TO SOMEONE YOU
RELY ON, SOMEONE REPUTABLE AND A
REPUTABLE LAB TO HAVE THE BLOOD
DRAWN.
DRAWN. GOING TO THESE DIRECT TO
CONSUMER TESTING, THE INTERNET,
IS VERY GOOD FOR ANCESTRY, BUT
NOT VERY GOOD IN --
>> DON’T BASE YOUR HEALTH ON
THAT?
THAT? >> I WOULDN’T BASE MY CLINICAL
DECISION-MAKING ON THAT.
>> MAUREEN, CATHERINE, BRIDGET,
THANK YOU.
THANK YOU. >> AND YOU ARE ALL DOING WELL?
>> YES.
>> YES. >> THAT’S WHAT COUNTS.
>> THANK YOU FOR BEING HERE.
ALL WEEK LONG ON TODAY.COM THERE
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