Are You Dense?

We spoke with Joe Cappello, Co-Founder and Executive Director, and President Donna Johnson about Are You Dense?, an organization dedicated to educating women about breast density and how it affects cancer detection. We also spoke about the upcoming For The Girls brunch on October 19th.

Episode Transcript

Speaker 1 (00:00):
Good morning, Thank you for listening to Community Access. I'm
Alison de Merz. My guest this morning is Joe Cappello,
executive director of Are You Dents, and also Donna Johnson,
the president of are You Dnse. Good morning, Good morning Ali.
October is breast cancer Awareness month. I literally last week.
I don't know if you saw my Facebook posts because
we're friends. I had my mammogram and I had my ultrasound,

(00:24):
and right because I have DNSE breasts, I'm not embarrassed
to say that I went and I had everything done.
But this was the best part Joe. For years, I
joked after having children that my breasts are like lily pads.
When I went for my mammogram, they had a little
white bachelor to get it inside the device. Uh, and

(00:46):
the lady let me take a picture of this, Spachela,
and I posted it on Facebook. If it's going to
save lives, right, let's talk about it. It's important, Allie.

Speaker 2 (00:57):
About six months ago, I had an all sound myself
because men get breast cancer. So I'm not embarrassed to
say that either. People don't realize it, but it is
a fact that they men do get breast cancer. I
know of two people, two men personally, and you know,
so it does happen. I don't know how often. For

(01:20):
a couple of reasons, I went ahead and got an ultrasound,
so it was it didn't hurt, it didn't do anything.
People really really need to go get screened, and if
you have an ultrasound after your mammogram, that's the way
to go. We're going to detect crest density.

Speaker 1 (01:38):
Did you get a good bill of health?

Speaker 2 (01:39):
I hope yes. I got a clean bill of health.
I have very nice breasts.

Speaker 1 (01:44):
That's so great. For those who don't know, how was
RUDNSE created, how did it come about?

Speaker 2 (01:51):
Well, it was twenty years ago. Ali. You knew my
wife Nancy, and you knew that her story was that
she did everything right. She was screened with a mammogram
every year, and she was told that she had breast cancer.
And she thought, well, since I do eat the right

(02:14):
food and I exercise and I do everything right, I
don't understand why I could have not only breast cancer,
but a late stage breast cancer. And she went ahead
and decided that, you know, this is so unusual. She
talked to her docs and the docs said, well, Nancy,
you got dense breasts and she says, well, what's that

(02:35):
And that's why they could not find a tumor in
her breast. Was the mammogram which started us off on
a plight twenty years ago. And twenty years ago we
decided to do something about it, and we found that
we started Are You Dense as an organization and a nonprofit,
and we just continued from then on. It was laws

(02:56):
that we passed, insurance laws and all around the country.
First Connecticut was the first in the nation to pass
legislation so that a doc must tell the patient that
she's got dense press. And it's been quite a trip
because neither Nancy or I ever thought we'd be in
this type of business, and it is a business. Let

(03:18):
me tell you, we learned a lot. I am sure
that we've saved a lot of lives, and we've got
some wonderful people that have joined us, such as Donna
Donna Johnson who's our president now, and we've had many
people to help us along the way.

Speaker 1 (03:32):
One of the main takeaways is that if you do
have dence press, besides the mammogram, you should also have
an ultrasound so that they could see better and I
believe that's what Nancy also fought for was legislation and
insurance to make sure that women do know they have
dense press and if they do, not only should they

(03:52):
have a mammogram, but also an ultrasound.

Speaker 2 (03:55):
You are right.

Speaker 3 (03:56):
September tenth, twenty twenty four, the legislation went nationwide that
women have to be notified on their mammogram about their
breast density. It finally went nationwide. Connecticut was the first date.
At the time of this passing, there were thirty eight
states that had it, but now it is nationwide. So

(04:17):
that was one of our major major goals. It took
us twenty years to do it, but thanks to are
You Dense, it is now on. Women have to be notified.

Speaker 2 (04:29):
Now.

Speaker 3 (04:29):
The next fight, of course, is insurance coverage.

Speaker 1 (04:33):
Well, I can remember twenty years ago, your beautiful wife,
Nancy getting up in church and going up on the
altar to speak to hundreds of people. God just opened
the doors. She went everywhere, I mean all over the world,
all over the United States, telling her story brave, strong, beautiful,

(04:55):
I mean beautiful. You really lucked out there, Joe, I mean,
you're a good looking guy, really, and her personality too.
I just honor her today. She started this crusade, and
twenty years later, here.

Speaker 2 (05:12):
We are or an international organization, small and but powerful.
And you know, we've had influence in Ireland, in Japan, Italy,
maybe half a dozen more countries that are a big,
big time and they've changed their laws, they've changed the
way they do business when it comes to talking about

(05:33):
breast density. So it's just not a Connecticut thing. It
was started out in Connecticut. We never thought I'd go
any further. We just wanted to tell our family about
breast density. But then it went on to the state,
all around the state, and all around the country and
all around the world.

Speaker 1 (05:51):
Well, I wouldn't have had the ultras on the other
day if not for Nancy.

Speaker 2 (05:55):
Right, that's right. If you have extremely dense breasts, four
to five times more likely to get breast cancer, and
of postmenopausal women have breast density. So this is not
something that's hidden. It's something that's well known by the
docks and something that everyone should know. If you're a

(06:17):
woman and you have a mammogram, it will tell you
if you have dense breasts.

Speaker 3 (06:22):
Well, dense breast tissue is pretty much one of the
biggest indicators reasons women go undiagnosed, so family history of course,
the brack of gene is another. So dense breast tissue
is up there with it. With breath. There's no symptoms.
I mean, you may eventually get a lump or something,
but when it starts out, it's very small, which is

(06:44):
why they do the mammogram and then they go on
to the ultrasound. I can remember being in the reading
room with one of the docks telling a patient what
do you mean I have cancer? It doesn't hurt and
she has a huge mass and it didn't hurt at all,
So it's tricky.

Speaker 1 (07:00):
That's why you have the screening, right, And that's why
we do our own exams at home before your menstrual cycle,
after your menstrual cycle, because sometimes you can get a
lot prior to your menstrual cycle and that's all it
was and then it goes away.

Speaker 2 (07:14):
Right, Ali, We've learned a real lot over the years,
and we find that this information is extremely important to
get out to everyone, and that's why we appreciate you
taking the time to let us talk about what's important
to us, and that's press density. We get questions all
the time which is very understandable. How are you folks funded?

(07:36):
Because we've done so much good work, we must be
funded somehow. And I could tell you this that for
the folks listening on your show, we're not funded by
any organization. We are funded by good people who decide
that they want to help. And if we have an
event like Donald's going to talk about, if we have
an event to raise money, then we get sponsors for

(07:59):
the event. So it's really the way we've done it
for the last twenty years and it seems to work
for us.

Speaker 3 (08:05):
We have two major events every year. One is the
Music Fest and the other is a brunch. We call
it for the girls and guys. It's a Sunday brunch
in several years at the Grand Oak Villa, which is
in Oakville. It's a lovely place. They have great food
and lustices in Bellini's. But that's coming up on October nineteenth.

(08:28):
If anybody's interested in it attending, you can go on
our site orudense dot org and get tickets that way.
We do have great sponsors again this year we have
Saint Mary's Trinity Health. They have been so generous to us,
so kind over the years, so they're a great help.
And then we also we have the Lever Center Harold

(08:49):
Weaver Regional Cancer Center, not the tuch Valley Radiology has
helped us my office Diagnostic Radiology. We have great sponsors
and they really help defer the costs. Just want to
mention real quick. You know, Waterbury can be very generous
and we've had people over the years that give us
raffle donations and that kind of thing like quilts. That

(09:10):
Care is another organization out of water Bury. They make
quilts for cancer patients. They make the quilt, then they
donate them to over twenty two different facilities and they
always donate a quilt for whatever event we're having. So
it's people like that Sweet Marie's Bakery, which is you know,
the greatest place in Waterberry. They always give us something.

Speaker 2 (09:32):
You know.

Speaker 3 (09:33):
It's small things like that that we really appreciate people
donating and giving us things. So I just I like
to mention those. It's great to have the big thousand
dollars sponsors. They're wonderful, but little people to donate and
reappreciate it immensely.

Speaker 1 (09:50):
I was born and raised in Waterberry. Can't take the
Waterberry out of the girl. Right, what time is this
event happening on October now nineteenth?

Speaker 3 (10:00):
It was eleven thirty to two thirty or you know
when we finish up. I forgot to mention. We do
have a guest speaker this year. A lot of people
know her Donna Palumba, who has been through quite a bit,
but a lot of people don't know she's also a
breast cancer survivor. So she will be speaking at our event.

Speaker 1 (10:18):
Founder of Jane Donno Moore and yes, she is an
amazing human being. This is going to be quite a
beautiful event.

Speaker 2 (10:24):
Yes, we're going to have the amazing Leo and Gala
with the sounds of Leo. Now, if you've never heard
of Leo, Leo is Vinny's dad and then got all
his talent from his father. Leo made me fit to
say that it's.

Speaker 3 (10:41):
Really a great mix of music that he plays. Everybody
loves it. Everybody is kind of singing along under their breath,
you know, and humming along. It's it's a lovely event.
We do a survivor's walk. We have a wine pull,
which is fun. You have to be over twenty one
by a cork, but we have a wine I have raffles,
and who knows what else.

Speaker 2 (11:01):
Our second last event of the year, and we only
have two major events, so we really count on the
generosity of folks who show up, come on, have a
good time, and let's make some money.

Speaker 1 (11:13):
I'm speaking with Donna Johnson, president of Are You Dance
and Joe Cappello, executive director of r You Dents. Again.
If you'd like to sponsor, make a donation, volunteer, attend
this event, please go to rudens dot org. It's going
to be on October nineteenth. It's a beautiful brunch from
eleven thirty to two thirty with music. Donna Palumba the

(11:35):
guest speaker. Thank you both so much for being here
and for serving the community.

Speaker 2 (11:41):
Thank you Allie appreciate this