Do You Have Dense Breasts?

Michelle King Robson:
Welcome back to EmpowHER Live. Nancy, I am so happy to have you here with us today.

Nancy Cappello:
Michelle, oh, it’s so great to meet you and be here.

Michelle King Robson:
This Women’s Conference is so amazing.

Nancy Cappello:
It’s phenomenal; it’s phenomenal.

Michelle King Robson:
I mean, I have met the most amazing women, you included, so tell us, you are a doctor?

Nancy Cappello:
Yes, I have a Ph.D. in education administration. I am not a medical doctor – no stethoscopes. But I am an educated woman and what really amazed me was in 2004 I was diagnosed with an advanced stage cancer – breast cancer, stage-3c.

Michelle King Robson:
Now what is stage 3c mean?

Nancy Cappello:
There are four stages of breast cancer and stage 3, there’s a, b and c, and I was c because when my cancer was discovered, not on mammogram and that’s why I am here to only talk to you about, it was an inch in diameter. In addition to that, there were 13 lymph nodes cancers.

Michelle King Robson:
So you had 13 lymph nodes that were affected and had you been having your mammograms regularly?

Nancy Cappello:
Yes, I had a decade, Michelle, of yearly normal mammograms. In fact, just a month before my breast cancer was diagnosed I had, because I was a very faithful patient. I ate healthy. I exercised daily, even this morning at 4:00 a.m.

Michelle King Robson:
Good for you, that’s why you look like you do.

Nancy Cappello:
Thank you. I had no first degree relatives with breast cancer and I had my yearly mammogram and so for a decade, because I really believed it’s important for women to empower themselves and to do what I needed to do to stay healthy, and so I did that and what really, and again, no first degree relatives with breast cancer.

Michelle King Robson:
I so you went and you had your mammograms and all of a sudden they tell you, you have stage-3c cancer you’ve got to be shocked.

Nancy Cappello:
Shocked! Well here’s the thing – I just had a mammogram that was fine. I was 51 at the time and I said, okay, now I need my colonoscopy because again, being a faithful patient, and so what happened was a month after my happygram, which that I was normal, I had gone for my annual gynecological exam being a faithful patient and my gynecologist was doing a thorough breast exam, which is critically important to have done and then she was examining my right breast and said, “You know Nancy, I know you just had a normal mammogram but I feel this thickening in your right breast. So I am going to send you for another one and an ultrasound.”

And here is what was so shocking Michelle, the mammogram still could not see anything, but the ultrasound picked up an inch tumor which was later diagnosed as stage-3c; 13 lymph nodes cancer, a normal mammogram weeks before.

Michelle King Robson:
And so that’s why you’ve started the foundation.

Nancy Cappello:
Yes.

Michelle King Robson:
AreYouDense.org?

Nancy Cappello:
Are You Dense and here is what’s so critical about Are You Dense? So I said to my breast surgeon it wasn’t that I had breast cancer because I know we struggle with, what’s the cure and why do some get it and some don’t? And only about 10% there’s a genetic link. It was that it was so late stage and that I did everything I was told to do.

So when I asked my breast surgeon, “Well why didn’t the mammogram find the cancer and why is it late stage?” and she said, “Well Nancy, you have dense breast tissue.”

Michelle King Robson:
And you didn’t know that.

Nancy Cappello:
I never heard those terms.

Michelle King Robson:
So no one told you?

Nancy Cappello:
No, in 2004 no one told me and so what I did was I wrote it down being a really good educator, and I started doing a search on what the heck does that mean and what was outrageous to me was that at the time there were six major studies. I had to research the medical journals to find this information. There was nothing in the lay journals. Any women’s journal you would see nothing about dense breast tissue. In fact, the American Cancer Society, even Koman didn’t have anything.

So I started looking for information and I found out a couple of things – two-thirds of premenopausal women and a quarter of post-menopausal women, have dense breast tissues.

Michelle King Robson:
So two-thirds?

Nancy Cappello:
Two-thirds. I also found out that mammograms are limited because there’s no contrast. When you look at a mammogram, cancer is white; so it’s density. You can’t see it. So year after year there’s this hidden intruder not being seen, extremely dense tissue.

The other thing I found out was that women who have extremely dense tissue, especially as you get older, are at a greater risk of getting breast cancer. So after all this research that I found I thought, I have to do something about this.

Michelle King Robson:
So when did you start this?

Nancy Cappello:
Well I started this, I started talking about my breast to anybody who listened, even if they didn’t buy me lunch, nor a drink

Michelle King Robson:
I know, I always say I just strip my clothes off and I am naked on the street corner talking about all my health issues because we have to, right? How are we going to get this information out to other women if we don’t?

Nancy Cappello:

So I ended up in 2005, during chemotherapy, I had seven surgeries since then, that I started saying to my husband, we have to start telling women about this. So we started thinking. I created a brochure called “Are You Dense?” and…

Michelle King Robson:
Love the name, by the way.

Nancy Cappello:
Thank you, and I also started working with the Connecticut legislature and we passed two bills since 2005.

Michelle King Robson:
Oh that’s amazing. Good for you.

Nancy Cappello:
One for informing women about their breast density, which is the only bill in the United States that when a woman has a mammogram her report must include information if she has dense tissue about that and what it means to her.

Michelle King Robson:
Well we need to do that across the country.

Nancy Cappello:
Absolutely.

Michelle King Robson:
Are you trying to get something…oh good.

Nancy Cappello:
Yes, we are; I am working with women in other states because what has happened Michelle, is that women have found me and have said, “I have the same story”. If you go on my website AreYouDense.org you will find lots of stories about women who either had had late stage cancer or in Connecticut, early cancer found on ultrasound as a supplement to the mammogram on a regular normal mammogram because they have been empowered to ask the right questions and it should not depend on where you live to have an early stage breast cancer diagnosis.

So we are working with women and we actually have bills in Texas, Florida, New York. There’s a woman named Amy who is working now in California to get a bill. She was here working with me at the Are You Dense booth today. In addition to that, we have Kansas interested Missouri and Massachusetts and in 2011 we are hoping to have a Federal bill introduced for information about a woman’s breast density because knowing your breast density is a matter of life, Michelle.

Michelle King Robson:
So what can we at EmpowHER do to help you?

Nancy Cappello:
Well what you can do at EmpowHER, you can really inform women about their breast cancer, link them to our website, have them ask questions. We have brochures in Spanish and in English. Our website is also in Spanish about; what do you do? How do you get your real report? Do you know there’s another report that the radiologist generates that most women never see and when I got those reports, guess what they said?

Michelle King Robson:
It had it in there.

Nancy Cappello:
Exactly.

Michelle King Robson:
Which is what has happened to me and I always say to women get all of your reports. Don’t just get that one sheet that says okay, you are okay, good to go until next year. You can’t do that because it’s amazing what they won’t tell you. It’s almost as if… it’s not as if they are not trying to share this information; it’s just that I think they don’t want to explain it to you or they don’t think we are going to understand it and quite frankly, they don’t give us enough for our intelligence.

Nancy Cappello:
Absolutely, and again, you have to be armed with knowledge. You have to empower yourself and then you have to do what you know is right and then certainly work with your doctors to have this done best for you. But I always say, I always tell women, know ahead of time. Take a little notebook with you. Write down your questions. Take a friend with you even, but you have to ask about your breast density and if you have dense tissue you really, really should supplement your mammogram with another tool.

Michelle King Robson:
So how are you today?

Nancy Cappello:
Well you know it’s a chronic disease. I am six and a half years out. I am educating myself. I have ultrasounds every twice a year. I have my mammogram every year. I get my thorough breast exam from my gynecologist. I also do MRIs every other year. I have my blood work done, but again it’s a chronic disease. I am on hormone therapy and I do worry about recurrence because the chances are I had a late stage cancer, I had 13 lymph nodes. You will look at the lymph nodes as far as the ability to live a long life and a healthy life. So I took my outrage and I really want to change it for other women.

Michelle King Robson:
And good for you and I mean, I can’t thank you enough for advocating on behalf of women everywhere and I know that you are going to save so many lives and we’ll do anything we can to help you.

Nancy Cappello:
And I really appreciate that because I caught the best kept secret. Do you know there was a survey done this year and only 95, only one out of ten women, find out about their breast density from their doctors, hence why we do Are You Dense, and the other thing is 95% of women have no idea what their breast density is and what it means to them, for their life.

Michelle King Robson:
Right, and that’s what we have to change.

Nancy Cappello:
Absolutely.

Michelle King Robson:
It’s all about us. Well thank you so much Dr. Nancy for sharing and tell our women again where they can go.

Nancy Cappello:
So happy to meet you. Yes, AreYouDense.org and find a lot of information, a lot of resources, a lot of stories shared, know your breast density ladies because it is a matter of life. Thanks Michelle. It’s wonderful.

Michelle King Robson:
Thank you, and that’s EmpowHER Live.

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• Breast Cancer
• Prevention Centers