THE WOMEN YOU ARE LOOKING AT APPEAR NO DIFFERENT THAN ANY ONE
OF US.
MOTHER, DAUGHTER, SISTER, FRIEND.
BUT THESE LADIES ARE MORE THAN JUST ANOTHER FACE IN
THE CROWD.
ALTHOUGH YOU CAN'T TELL JUST BY LOOKING AT THEM,
SOME OF THEM ARE DYING.
THEIR DAYS?
NUMBERED.
WHILE OTHERS HAVE ALREADY LEFT US.
THE PHRASE WE TAKE TOO MUCH FOR GRANTED
TAKES ON A NEW MEANING IN THIS SEGMENT.
OUR SPECIAL GUESTS ARE KELLY LANGE, PAST PRESIDENT OF
METAVIVOR RESEARCH AND SUPPORT AND CJ CORNELIUSSEN-JAMES A CO
FOUNDER AND THE DIRECTOR OF ADVOCACY FOR THE ORGANIZATION
WHICH IS DEDICATED TO THE SPECIFIC FIGHT OF WOMEN AND MEN
LIVING WITH METASTATIC BREAST CANCER.
LADIES, GOOD MORNING.
THANK YOU SO MUCH FOR BEING HERE.
THANK YOU FOR HAVING US.
NOW, I'M SURE ALL OF US KNOW SOMEONE WHO HAS OR HAD BREAST
CANCER.
AND IN MANY CASES THEY WENT ON TO TALK ABOUT HOW THEY
BEAT IT.
BUT TODAY WE WANT TO BRING AWARENESS TO A WHOLE
COMMUNITY OF BREAST CANCER PATIENTS WHO WILL MOST LIKELY
LOSE THAT BATTLE.
AND PRACTICALLY NO ONE WHO HAS HAD
BREAST CANCER IS IMMUNE.
LADIES, FOR STARTERS, ONCE AGAIN, I
THANK YOU SO MUCH FOR BEING HERE.
KELLY, LET'S TALK ABOUT METASTATIC BREAST CANCER.
WHAT IS IT?
METASTATIC CANCER IS CANCER THAT HAS SPREAD BEYOND IT'S ORIGINAL
ORIGIN.
AND INTO ANOTHER ORGAN IN THE BODY.
SO METASTATIC BREAST CANCER ORIGINATED IN THE
BREAST AS BREAST CANCER BUT THEN HAS SPREAD TO A DISTANT ORGAN
WHERE IT BECOMES DEADLY.
SO, TYPICALLY THAT IS LUNG OR BONE
OR BRAIN OR LIVER.
MOST COMMONLY BUT BREAST CANCER METASTATIC
BREAST CANCER CAN DO WHATEVER IT WANTS.
THERE ARE NO RULES.
CJ?
IF YOU KNOW SOMEBODY WHO'S DIED OF BREAST CANCER, THEY'VE DIED
OF METASTATIC BREAST CANCER, IT'S THE ONLY BREAST CANCER YOU
CAN DIE FROM.
MANY PEOPLE HAVE NEVER EVEN HEARD OF IT BUT IT'S
FAR MORE COMMON THAN YOU WOULD THINK AND IT'S VERY DEADLY.
SO, THERE IS NO CURE OBVIOUSLY.
THERE IS NO CURE.
KELLY, NO CURE.
AND IT'S AMAZING BECAUSE WITH SOME CANCER
PATIENTS, YOU HEAR THAT THEY ARE AT LEAST FIGHTING AND TRYING TO
BEAT THE CANCER.
BUT WITH METASTATIC BREAST CANCER YOU
MOST LIKELY WON'T SURVIVE.
THAT'S RIGHT, AND 98 PERCENT OF CASES THIS IS A TERMINAL
ILLNESS.
SO, WE HOPE FOR EFFECTIVE TREATMENTS THAT
INCREASE OUR LIFESPAN WITH GOOD QUALITY OF LIFE BUT IT DOESN'T
ALWAYS WORK THAT WAY.
WE CONTINUE TO LOSE ABOUT 40,000
AMERICAN WOMEN AND MEN EVERY YEAR.
A NUMBER THAT HASN'T CHANGED IN DECADES.
SO, THE SCARIEST THING PERHAPS, IS THAT
1 AND 3 PEOPLE WITH EARLIER STAGE BREAST CANCERS WILL
EVENTUALLY METASTASIZE.
EVEN STAGE ZERO PATIENTS CAN AND DO
METASTASIZE.
IT CAN HAPPEN IMMEDIATELY, PRESENTING
INITIALLY AT STAGE 4 AND IT CAN ALSO HAPPEN 25 YEARS LATER.
NO ONE IS SAFE FROM THIS.
AND I DO WANT TO TELL MY VIEWERS AND BEFORE WE GO ANY FURTHER,
I'D LIKE TO SHARE WITH THEM THE FACT THE BOTH OF MY GUESTS,
KELLY AND CJ.
THEY BOTH HAVE METASTATIC BREAST CANCER.
CJ CAN YOU SHARE YOUR STORY WITH US?
YES.
ACTUALLY I RETIRED FROM THE AIR FORCE AFTER 24 YEARS AS AN
INTELLIGENCE OFFICER IN 2003 AND WENT LATER THAT YEAR FOR MY
ANNUAL MAMMOGRAM AS I ALWAYS DO.
AND AT THAT POINT, THEY SAW NOTHING.
IT WAS A CLEAN MAMMOGRAM.
BUT THREE MONTHS LATER I FOUND A LUMP UNDER MY
ARM.
SO, I WENT STRAIGHT TO THE DOCTOR AND I HAD STAGE 2 BREAST
CANCER.
THEY RUSHED ME INTO SURGERY AND I HAD EXTENSIVE
CHEMOTHERAPY AND RADIATION AND WENT ON A PILL REGIMEN.
BUT IN LESS THAN 2 YEARS, I HAD
METASTASIZED TO MY LUNG.
SO, IT CAN HAPPEN THAT FAST.
MAMMOGRAMS DO NOT SEE ALL CANCERS.
THEY SOMETIMES MISS THEM.
AND YOU CAN METASTASIZE AT ANYTIME.
WERE YOU SCARED?
I WAS REALLY TERRIFIED AND WHAT BECAME VERY CLEAR TO ME AT THAT
POINT WAS THAT THE PINK COMMUNITY AS WE SOMETIMES REFER
TO IT, THEY ARE LARGELY SET UP FOR STAGE 0, 1, 2, AND 3 BREAST
CANCER.
METASTATIC BREAST CANCER IS A VERY DIFFERENT DISEASE.
THEY ARE NOT SET UP FOR IT AND PEOPLE ARE LARGELY AFRAID OF THE
DISEASE AND THEY DON'T WANT TO DEAL WITH PEOPLE WHO HAVE STAGE
4 CANCER SO YOU ARE REALLY ISOLATED AND ALONE.
KELLY CAN YOU SHARE YOUR PERSONAL STORY?
SURE.
I WAS DIAGNOSED WHEN I WAS 32.
19 YEARS AGO.
OVER THE YEARS, I'VE HAD SEVERAL REGIONAL
RECURRENCES AND LYMPH NODES AND EVENTUALLY IT METASTASIZED TO MY
SKIN.
I LATELY HAVE ENJOYED A RELATIVELY LONG PERIOD OF GOOD
DRUG RESPONSE WHICH I'M VERY GRATEFUL FOR.
AND WHILE I WILL SAY THAT MY RESPONSE TO MY DRUG
HAS BEEN UNUSUALLY GOOD, THE DIAGNOSIS AT MY AGE IS NOT
UNUSUAL.
LADIES, YOUR STORIES ARE NUMBING AND I KNOW THERE ARE SO MANY
SIMILAR STORIES OUT THERE AND THESE TWO LADIES HAVE SO MUCH
MORE TO SHARE WITH US THIS MORNING.
BUT WE HAVE TO TAKE A QUICK BREAK.
WHEN WE COME BACK, WE ARE GOING TO HEAR HOW THEY'RE
MANAGING TODAY IN SPITE OF FACING THE ULTIMATE DEATH
SENTENCE.
WE ARE ALSO GOING TO DISCUSS HOW YOU CAN HELP PUT
THIS DEVASTATING DIAGNOSIS IN THE PUBLIC LIGHT WITH THE END
GAME OF SAVING LIVES.
STAY WITH US.
(SOFT GUITAR MUSIC) (COMMERCIAL BREAK)
(MUSIC) WELCOME BACK EVERYONE.
WE'VE BEEN TALKING WITH KELLY LANGE,
PAST PRESIDENT OF METAVIVOR RESEARCH AND SUPPORT AND CJ
CORNELIUSSEN-JAMES CO FOUNDER AND THE DIRECTOR OF ADVOCACY FOR
THE ORGANIZATION.
AND ALSO NOW JOINING US IS LORI MARX RUBINER.
PRESIDENT OF METAVIVOR.
ALL OF THESE LADIES HAVE THE DEADLY METASTATIC BREAST CANCER.
WHICH MEANS THE CANCER HAS SPREAD FROM THE BREAST TO OTHER
PARTS OF THE BODY.
AS WE DISCUSSED EARLIER THERE IS NO
CURE FOR METASTATIC BREAST CANCER.
NO CURE WHATSOEVER.
LORI, LET ME BRING YOU IN.
ON AVERAGE, WHEN THERE IS A
DIAGNOSIS WHAT IS THE AVERAGE LIFESPAN?
SO, LIFE EXPECTANCY IS ABOUT 2 YEARS.
AND THAT'S FROM THE TIME OF A METASTATIC DIAGNOSIS.
AND I HAPPEN TO HAVE BEEN DIAGNOSED ON
A ROUTINE MAMMOGRAM.
MY DOCTOR FOR WHATEVER REASON, HER
INSTINCT WAS TO DO A BASELINE MAMMOGRAM WHEN I WAS 35.
I WAS DIAGNOSED AT STAGE 2 AND UNDER
WENT SURGERY AND CHEMOTHERAPY. 5 YEARS OF HORMONE TREATMENT AND
WAS DOING REALLY WELL.
SEEMINGLY WELL FOR THE NEXT 8 YEARS.
AND THEN AROUND YEAR 9, STARTED
SEEING SOME SUSPICIOUS FINDINGS IN MY BLOOD WORK AND ON MY SCANS
AND WAS THEN DIAGNOSED AT STAGE 4.
I CAN ONLY IMAGINE LADIES, AND KELLY IF YOU WANT TO CHIME IN,
BETWEEN EVERYTHING YOU DO, YOUR PERSONAL ACTIVITIES, YOUR BUSY
LIFE, YOUR FAMILY.
BEING A METAVIVOR LADY, IF YOU WILL.
I GUESS IT ALL HELPS?
IT DOES.
YOU KNOW, BETWEEN OUR TREATMENTS, WE'RE ABLE TO DO A
LOT OF THINGS.
AND I, AS I'VE SAID BEFORE, I PARTICULARLY
ENJOY A GOOD QUALITY OF LIFE.
I'M VERY GRATEFUL FOR THAT.
THAT ENABLES ME TO CONTINUE MY
VOLUNTEER WORK AND SPENDING TIME WITH FAMILY AND FRIENDS.
BUT A LOT OF THE SIDE EFFECTS THAT WE
EXPERIENCE ARE REALLY NOT VISIBLE LIKE SOMETIMES CRUSHING
FATIGUE OR MOUTH SORES OR DEBILITATING PAIN THAT COMES AND
GOES.
ANEMIA CAN BE A PROBLEM THAT YOU JUST LEARN TO LIVE
WITH.
YOU HAVE TO MOVE FORWARD.
THERE IS NOT A GOOD ALTERNATIVE TO
THAT.
BUT IT IS SOMETHING THAT ALWAYS ON YOUR MIND.
YOU TRY NOT TO DWELL ON IT BUT YOU ARE
ALWAYS ALERT.
LORI, KEEPING BUSY AND DOING WHAT THESE LADIES DO, DOES IT
HELP YOU THINK OF THE INEVITABLE?
I THINK THAT'S ALWAYS UNDER THE SURFACE.
IT'S HARD NOT TO LIVE WITH THAT.
BUT ALSO, YOU KNOW, WE ALL, AND I THINK MOST OF THE
PEOPLE WE KNOW LIVING WITH STAGE 4 DISEASE LIVE IN SPITE OF IT.
AND REALLY WANT TO LIVE FULLY.
KELLY, LET ME ASK YOU ABOUT THE ACTUAL ORGANIZATION.
THE FUNDING, JUST TELL ME ALL ABOUT
METAVIVOR.
WELL, THE WORD METAVIVOR REALLY IS A BLEND OF THE WORD SURVIVOR
AND METASTASIS.
I SEE.
A LOT OF FEEL THAT THE WORD SURVIVOR DOESN'T ADEQUATELY
REPRESENT OUR SITUATION BECAUSE WE WON'T SURVIVE THE DISEASE.
SO, WE COINED THE TERM METAVIVOR, ONE OF OUR CO
FOUNDERS DID, AND FOUNDED THE ORGANIZATION TO FUND RESEARCH
FOR METASTATIC BREAST CANCER.
SO, OVER THE YEARS WE STARTED FUNDING OUR FIRST GRANTS WITH
EVENTS IN OUR HOME TOWN.
WE STARTED LITERALLY WITH YARD
SALES AND RAFFLES.
AND NOW WE ARE VERY GRATEFUL THAT PEOPLE
ALL OVER THE COUNTRY HOST FUNDRAISERS FOR US.
AND NO DOUBT THE FUNDING I WOULD THINK, IS NOT AS MUCH AS YOU
WOULD LIKE TO SEE.
RIGHT CJ?
THAT'S CORRECT.
WE COULD NOT FIND ANY PLACE THAT WOULD USE
ANY FUNDS WE DONATED SPECIFICALLY FOR METASTATIC
CANCER RESEARCH.
SO, WE SAID FINE, WE'LL DO IT OURSELVES.
WE SAY, THAT SINCE 30 PERCENT OF
PATIENTS ARE METASTASIZING FOR ALL CANCERS, THEY NEED TO RAISE
THAT LEVEL OF FUNDING TO 30 PERCENT OF CANCER RESEARCH
FUNDS.
I MUST TELL YOU, YOU LADIES ARE SUCH AN INSPIRATION AND YOUR
STRENGTH IS REMARKABLE TO ME.
REMARKABLE.
IF I COULD ASK KELLY SOME LAST WORDS THAT YOU WOULD SAY FOR
SOMEONE THAT MAYBE TODAY OR TOMORROW IS GOING TO HEAR THAT
STAGE 4 DIAGNOSIS?
I WOULD SAY YOU ARE NOT ALONE.
IT HAPPENS TO SO MANY OF US.
WE WANT THE PATIENT TO KNOW THAT
THEY DID NOTHING TO CAUSE THIS.
THIS CAN HAPPEN TO ANYBODY, AT ANYTIME.
IT IS NOT THEIR FAULT.
IT'S NOT THAT THEY DIDN'T DO SOMETHING, IT'S NOT THAT THEY
DID DO SOMETHING.
STAGE 4 BREAST CANCER JUST HAPPENS.
I THINK I WOULD ADD THAT WE UNDERSTAND.
AND AS KELLY SAID, WE'RE HERE.
WE GET IT.
WE KNOW THAT THERE ARE MOMENTS OF DEEP
SORROW, PROFOUND FEAR, AND MOMENTS OF I'VE GOT THIS.
I CAN LIVE WITH THIS AND YOU KNOW,
MAKE THE MOST OF WHATEVER TIME WE HAVE LEFT.
WE ARE ALL LIVING ON BORROWED TIME.
WE'VE ALL PASSED THAT TWO YEAR MARK AND WE
WANT TO HELP MORE PEOPLE FOLLOW IN OUR FOOT STEPS.
GOD BLESS YOU ALL.
THANK YOU SO MUCH.
THANK YOU.
AND FOR MORE INFORMATION ON METAVIVOR AND METASTATIC BREAST
CANCER AND HOW YOU CAN HELP, VISIT OUR WEBSITE, THAT'S
THEBALANCINGACT.COM THEBALANCINGACT.COM