JOHN YANG: The end of breast cancer# treatment is cause for celebration,## but for many patients, it# can bring new challenges.## They can include lymphedema, painful swelling# of tissue due to excess fluid retention.## Some studies show up to 65 percent 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 ROGIN: Thank you both so much for being# here.

Dr.

Rockson, let's start with you.## Why is lymphedema so common# among breast cancer patients?

DR.

STANLEY ROCKSON, Stanford Medicine:# 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 percent of the# time, that damage can be accommodated by the body,## but 15 percent of the 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 percent will be relatively large.

ALI ROGIN: 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 in for consultation,## you asked questions about your risk.# What did doctors at the time tell you?

COL.

SUSAN FONDY (RET.

), Army: 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?## And 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,## but I had all of the other risk factors,# and he was just not educated in that.

And## he didn't know what to do about it,# so he didn't want to talk about it.

ALI ROGIN: 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# didn't help.

I pursued another surgical option## about a year ago and that I've seen# some big improvement from Dr.

Rockson.

ALI ROGIN: 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?

STANLEY 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 ROGIN: 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.

STANLEY 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 percent of cases.

Once the lymphedema# 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 ROGIN: 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?

SUSAN 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 ROGIN: 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?

SUSAN 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 diseases were dropped# entirely from the list, and nobody knows why.

So we've been advocating on Capitol 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 ROGIN: Dr.

Stanley Rockson,## Colonel and Dr.

Susan Fondy, thank# you both so much for joining me.

SUSAN FONDY: Thank you so much.

STANLEY ROCKSON: Thank you.