THE END OF BREAST CANCER TREATMENT IS CAUSE FOR CELEBRATION, BUT FOR MANY PATIENTS, IT CAN BRING NEW CHALLENGES.

THEY COULD INCLUDE LYMPHEDEMA, A PAINFUL SWELLING OF TISSUE DUE TO EXCESS FLUID RETENTION.

SOME STUDIES SHOW UP TO 65% OF WOMEN WHO UNDERGO BREAST CANCER SURGERY DEVELOP LYMPHEDEMA.

ALI ROGIN SPOKE WITH TWO MEMBERS OF THE NONPROFIT LYMPHEDEMA EDUCATION AND RESEARCH NETWORK -- DR.

STANLEY ROCKSON OF STANFORD MEDICINE, AND RETIRED ARMY COLONEL SUSAN FONDY, WHO'S ALSO A PHYSICIAN.

ALI: THANK YOU BOTH FOR BEING HERE.

DR.

ROCKSON, LET'S START WITH YOU.

WHY IS LYMPHEDEMA SO COMMON AMONG BREAST CANCER PATIENTS?

DR.

ROCKSON: LYMPHEDEMA OCCURS BECAUSE THE LYMPHATIC SYSTEM HAS BEEN DAMAGED AND SYSTEMATICALLY WE HAVE TO DO THAT BOTH TO DETERMINE THE APPROPRIATE TREATMENT FOR BREAST CANCER AND TO CURTAIL THE CANCER.

SO LYMPH NODES ARE REMOVED, BUT THAT CREATES DAMAGE.

80%, 85% OF THE TIME THAT DAMAGE CAN BE ACCOMMODATED BY THE BODY, BUT 15% OF TIME IT RESULTS IN MALFUNCTION AND THAT'S WHAT WE CALL LYMPHEDEMA.

AND BECAUSE BREAST CANCER IS SO COMMON AMONG WOMEN IN THE UNITED STATES, THE NUMBERS OF PEOPLE AFFECTED, EVEN IF IT'S ONLY 15%, WILL BE RELATIVELY LARGE.

ALI: COLONEL FONDY, YOU WERE DIAGNOSED WITH STAGE THREE BREAST CANCER AND DEVELOPED LYMPHEDEMA FOLLOWING YOUR TREATMENT.

BUT AS A PHYSICIAN YOURSELF, WHEN YOU WERE GOING ININOR CONSULTATION, YOU ASKED QUESTIONS ABOUT YOUR RISK.

WHAT DID DOCTORS AT THE TIME TELL YOU?

COLONEL FONDY: WHEN I WAS FIRST DIAGNOSED WITH BREAST CANCER, THE SURGEON SAW ME AND HE TALKED TO ME ABOUT THE POSSIBLE TREATMENT OPTIONS AS FAR AS SURGERY WENT, BUT HE NEVER MENTIONED LYMPHEDEMA.

AND THEN HE REACHED FOR THE DOORKNOB AND HE TURNED BACK AND ASKED ME IF I HAD ANY QUESTIONS.

AND I SAID, WHAT ABOUT LYMPHEDEMA?

AND HE SAID, WHAT ABOUT IT?

I WAS KIND OF SURPRISED.

I JUST SORT OF STAMMERED, I DON'T WANT TO GET IT.

AND HE SAID, YOU WON'T.

YOU'RE SMALL.

AND HE WAS MISTAKEN AND MISINFORMED.

THE ONLY RISK FACTOR THAT I DID NOT HAVE FOR LYMPHEDEMA WAS OBESITY.

I HAD ALL OF THE OTHER RISK FACTORS AND HE WAS JUST NOT EDUCATED IN THAT.

HE DID NOT KNOW WHAT TO DO ABOUT IT, SO HE DID NOT WANT TO TALK ABOUT IT.

WHEN I WAS FIRST DIAGNOSED, I WAS GIVEN A LYMPHEDEMA COMPRESSION SLEEVE.

VERY QUICKLY, MY HAND SWELLED UP AND THEN I WAS GIVEN A GLOVE AS WELL.

I HAVE WORN COMPRESSION SLEEVES AND GLOVES DAY AND NIGHT FOR MORE THAN 10 YEARS.

I PURSUED A SURGICAL OPTION IN 2016 AND IT DID NOT HELP.

I PURSUED ANOTHER SURGICAL OPTION ABOUT A YEAR AGO AND I HAVE SEEN SOME BIG IMPROVEMENT FROM THAT.

JOHN: DR.

ROCKSON, HOW COMMON IS IT FOR DOCTORS WHO TREAT BREAST CANCER TO NOT HAVE A TREMENDOUS AWARENESS OF THE POTENTIAL FOR AND TREATMENT OPTIONS FOR LYMPHEDEMA?

DR.

ROCKSON: IT'S UNFORTUNATELY VERY COMMON.

THE SITUATION IS IMPROVING, BUT NOT RAPIDLY ENOUGH.

I DID A STUDY BACK IN 2004 TO DETERMINE WHAT AMOUNT OF TIME IS SPENT IN A MEDICAL SCHOOL EDUCATION ON THE LYMPHATIC SYSTEM IN TOTAL AND LEARNED THAT ON AVERAGE, IT'S 15 TO 30 MINUTES OUT OF A FOUR-YEAR EDUCATION.

SO THERE'S NOT REALLY ENOUGH TIME TO PROPERLY EDUCATE CLINICIANS ON THE DIAGNOSIS AND TREATMENT OF EVEN A COMMON DISORDER OF THE LYMPHATIC SYSTEM IF IT'S NOT STUDIED.

ALI: AND DR.

ROCKSON, WALK US THROUGH THE SPECTRUM OF EFFORTS AND OPTIONS TO BOTH PREVENT GETTING LYMPHEDEMA AND THEN ALSO MITIGATING IT ONCE IT'S BEEN DETECTED.

DR.

ROCKSON: THE MOST IMPORTANT PREVENTIVE STRATEGY, OF COURSE, IS MINIMIZING THE NUMBER OF LYMPH NODES THAT NEED TO BE SURGICALLY EXCISED.

AND THERE HAS BEEN A MOVEMENT OVER THE LAST 20 YEARS PROGRESSIVELY TO ACCOMMODATE THAT NEED.

RADIATION PROTOCOLS HAVE ALSO BEEN CURTAILED IN SUCH A WAY AS TO MINIMIZE LYMPHATIC DAMAGE.

THEN WE NEED SURVEILLANCE.

AND IN WELL-INFORMED CENTERS, THIS OCCURS ON A QUARTERLY BASIS OVER THE NEXT 24 MONTHS AT A MINIMUM.

AND IF WE UNDERTAKE AGGRESSIVE TREATMENT AT THAT POINT, WE CAN ACTUALLY PREVENT LYMPHEDEMA IN ABOUT 50% OF CASES.

ONCE THE LYMPHEDEMMA OCCURS, THEN THERE IS A VERY STANDARD PROTOCOL FOR PHYSICAL INTERVENTIONS TO MINIMIZE THE AMOUNT OF EDEMA THAT HAS DEVELOPED DURING THAT PERIOD OF TIME, AND THEN A MAINTENANCE REGIMEN THAT INCLUDES COMPRESSION GARMENTS AND DEVICES AND OTHER APPROACHES TO TRY TO MAINTAIN THAT BENEFIT OVER TIME.

ALI: COLONEL FONDY, I'D LIKE TO ASK YOU ABOUT WHAT IT'S LIKE LIVING WITH THIS CONDITION.

YOU RECENTLY RETIRED AS AN ARMY FLIGHT SURGEON, BUT HOW DID IT AFFECT BOTH YOUR MILITARY CAREER AND YOUR EVERYDAY LIFE?

COLONEL FONDY: IT'S SOMETHING THAT CAUSES YOU TO NOT BE ABLE TO EVER BE DONE WITH CANCER.

I HAVE THIS THING THAT I LOOK AT OR I HAVE TO MANAGE EVERY MINUTE OF EVERY DAY.

AND IN THE MILITARY, IT WAS PARTICULARLY BOTHERSOME BOTH BECAUSE I WASN'T ABLE TO DO SOME OF THE THINGS I NEEDED TO BE ABLE TO DO, BUT ALSO BECAUSE EVERY TIME I SHOOK HANDS WITH SOMEBODY OR SALUTED, MY LYMPHEDEMA WAS FRONT AND CENTER.

SO I COULDN'T STEP BEYOND IT.

ALI: AND COLONEL FONDY, YOU HAVE BEEN ADVOCATING ON CAPITOL HILL IN SUPPORT OF FEDERAL FUNDING FOR LYMPHEDEMA RESEARCH.

WHAT IS THE STATE OF THOSE EFFORTS?

COLONEL FONDY: IN 2023 LYMPHEDEMA AND LYMPHATIC DISEASES WERE ADDED TO A LIST OF DISEASES THAT RECEIVE FEDERAL FUNDING FOR BASIC RESEARCH.

THIS PAST YEAR, LYMPHEDEMA AND LYMPHATIC DISEASE WERE DROPPED ENTIRELY FROM THE LIST.

AND NOBODY KNOWS WHY, SO WE'VE BEEN ADVOCATING ON CAPITAL HILL TO GET LYMPHATIC DISEASES ADDED BACK TO THAT LIST OF DISEASES THAT CAN COMPETE FOR THAT FUNDING.

THIS IS CRITICALLY IMPORTANT BECAUSE OUR LYMPHATIC RESEARCHERS THEY HAVE NOT BEEN , ABLE TO DO THE AMOUNT OF RESEARCH THAT IS NEEDED.

WHAT WE NEED ON CAPITOL HILL IS WE NEED ONE OF THE SENATORS TO BE A HERO.

WE NEED THEM TO STEP UP AND ADD LYMPHATIC DISEASES BACK TO THAT LIST OF DISEASES SO OUR RESEARCHERS CAN CONTINUE DOING RESEARCH.

FOR THIS VERY PREVALENT DISEASE.

ALI: DR.

STANLEY ROCKSON, COLONEL AND DR.

SUSAN FONDY, THANK YOU BOTH SO MUCH FOR JOINING ME.