Prakash Chandran (Host):  This program is a community service and is not intended to be a substitute for medical advice. Listeners having questions about their health should make an appointment to see their personal physician. Any opinions or statements made during the program are those of the individuals or physicians making the statements and are not the opinions or statements of the hospital.

This is “Healthy Conversations,” a podcast presented by Adventist Health.

For women, regular mammograms are the best way to detect breast cancer early. But if your mammogram report says that you have dense breast tissue; you may be wondering what that means. Today, we’re talking about dense breast tissue and an organization committed to educating the public about this important topic. Here with us to discuss is Joe Cappello, Executive Director of Are You Dense and Are You Dense Advocacy. Joe, thanks so much for being here today.

Joe Capello (Guest):  Thank you Prakash. Thank you for asking me to come on the show and hopefully we could talk about some things that will educate your audience. 

Host:  Absolutely. I definitely am looking forward to this. So, I’d love to get started by maybe you just telling us a little bit about the Are You Dense Organization.

Joe:  Well Are You Dense is an organization that my wife and I started back in 2009. My wife Nancy, she was diagnosed with stage IIIC breast cancer in 2004. And she had 13 out of 18 lymph nodes were cancerous and this is after ten years of normal mammograms. And you’d say well how come they didn’t catch the cancer? Well they explained to her that well you have dense breast tissue and she never heard of that word. No one has ever talked about it in the facility. And they went on to explain that dense breast tissue is a more fibroglandular tissue. It’s not fatty and therefore, hides cancer. 

The fibroglandular tissue is white and cancer in a mammogram is white. Therefore you cannot see the cancer growing. And they said it was growing for about seven years in her breast. And so, we decided that we needed to do something about this. There’s a misinformation. There’s a huge gap there between a doctor and patient and we wanted to make a law in the state of Connecticut that said that you need to tell the patient she has dense tissue and what that means. 

So, we started in 2009 with our legislature in Connecticut and we passed the first law in the country that mandated this information be told to the patient. And which started an avalanche of questions and people wondering what this is. We put up a website and we had all types of comments from all over the country. We ended up as of this day, we have got 37 states with legislation and that’s a huge task. And my wife really did all the heavy lifting. 

Host:  So, I think it’s amazing that you and your wife created this organization and just are increasing the awareness around dense breast tissue. Because like you said, there’s a knowledge gap. There’s that misinformation there and I think up until this point, there really hasn’t – this is really unfortunately the first time I’m hearing about the term dense breast tissue. So, I want to get into the specifics of what it is. So, let’s say my wife goes for her mammogram and the doctor mentions it or maybe now that she’s heard of this, she’ll ask if she has dense breast tissue. What are some of the things that these patients can look for specifically about dense breast tissue?

Joe:  Well, Prakash, the women in California are very fortunate. We’ve had a law in California for a number of years and this law mandates that the patient be told that she’s got breast density. And when this happens, the woman should realize that this is not abnormal. It’s quite common to have dense breast tissue. But the screening procedure must be different. The baseline comes from a mammogram. It will tell you the four degrees of density. And if you’re extremely dense, or heterogeneously dense; you really should get an ultrasound or an MRI. In fact, right in California you got two qualified companies to do this at Selma Carlson and Templeton Imaging and they are excellent at this. 

So, California women are very fortunate. 

Host:  One of the things that I can see in terms of why it’s so important to you is because like you said, this was growing inside of your wife for several years. This was something that they didn’t necessarily make you aware of and so, now it’s important really that you spread the word to everyone about this so they can catch it as early as possible. So, in terms of the procedure itself; you said it starts with a baseline of a mammogram, but then what can women expect to really look at that breast density and then how can they interpret it to see if there’s something wrong especially if they live outside of the state of California?

Joe:  When a woman receives her mammogram report, there should be – when there’s a state that has the breast density notification laws, she should recognize that there is going to be an additional screening. There should be. It may not be recommended but she should go. She should at least have a conversation with her physician about breast density. And what she can expect is to have an ultrasound, a simple ultrasound would have found my wife’s breast cancer seven years prior to finding out. 

Which I guess it beg to ask the question does early matter. And early does matter. An early diagnosis means less chemo, it means less radiation, it means maybe a lumpectomy instead of a mastectomy. Early really matters. And so therefore, it behooves women when they are told they have breast density, it doesn’t mean that you have cancer. What it does mean is that if you have cancer it may be hidden because of the density of your breasts. 

Every year, 45,000 women walk away from their physician’s screening with normal mammograms and they have cancer. And it was not picked up in the mammogram. That’s 45,000 women every year. That’s a lot of mothers, that’s a lot of daughters. 

Host:  That is unbelievable that so many women walk away from a mammogram which is supposed to be a preventative measure and still have that breast cancer because like you said, it doesn’t necessarily catch it due to the breast density. So, I think what you said is so important in terms of going early, going often and if you do have that breast density, it does make sense to just to be on the safe side, get an MRI wouldn’t you say?

Joe:  Well, the standard protocol would probably not be an MRI, it would probably be an ultrasound. Because an MRI is expensive. Your insurance may not cover that. And if insurance doesn’t cover it, of course, you’ve got to go based on what the recommendation of your physician is. Always rely on your physician’s information. But if that only happened to my wife, it would have been tremendous for us because she wouldn’t have had to go through all the ugliness of breast cancer. And she ended up I don’t know if you know this story, but in August after 15 years of being treated for breast cancer, Nancy ended up with MDS which is in technical terms myelodysplastic syndrome. It’s really bone marrow cancer. And it’s treatment related. In other words, she got this bone marrow cancer because of her serious treatments 15 years ago for her breast cancer. 

And she unfortunately passed away November 15th due to this MDS. So, the question begs itself again. Does early matter? Absolutely.

Host:  You know Joe, thank you so much for sharing that with our audience and obviously, we are all very sorry for that loss and I know that what you’re doing right now is continuing her legacy in sharing this information with people because it is so important to catch it early because as you mentioned, with your wife, because she had to go through so much treatment it caused there to be unnecessary pain and heartache and struggle and I just really appreciate what you’re doing here today. And I just thank you so much for the organization that you’ve created. 

Joe:  Well, our organization – if someone wants information about dense breast tissue; they can go to www.areyoudense.org and it’s spelled out are you dense.org and I wanted to mention one good thing that happened very recently is that we now have a national law as of two months ago. President Trump signed a national law Breast Notification Law which will take effect sometime within the next 18 months and we’re very excited about that. And Senator Feinstein worked with Nancy on this and she promised she’d get it done and she did. So, we appreciate that very much. 

Host:  That is amazing. And this notification law that when it passed, can you talk a little bit about what that actually does now that it’s in effect?

Joe:  All the providers need to change their way of doing business. Now that there’s a law a national law, they are going to change the way they do mammograms and what I mean by that is the notifications and the paperwork to follow up on patients is going to be different. It’s going to be more uniform and that really is a big deal as to standardize the communications between patients and providers. And this is a major, major step. This is an unbelievable thing that’s happened. This is a groundswell effort from my wife and myself and all of our volunteers in Connecticut and it’s become a national law. Some legislators are in there- physicians for years and never even have their name on a law. But here we did. We passed a law in the good old United States and we’re going to save not thousands, but millions of lives. And that’s just in the US. 

Host:  And that’s just the testament to the hard work and the passion that you and Nancy had around this and I just cannot believe that you’ve been able to pass it this quickly and it’s clear that our government also saw that need as well. So, I just kind of want to start wrapping up with reminding us where can women get the recommended screening tests?

Joe:  Women can when their physician tells them that they need additional screening, they should go to an organization like Selma Carlson or Templeton Imaging. I know those are located in California. You need to go to a screening facility that has MRI and ultrasound. Some of it is automated ultrasound, some of it is hand held. They are doing so many of them now, they are very good at it. And as time goes on, they’ll get better and better at screening. 

Host:  And just the last question, now that you’ve or you’re on the brink of passing this law; what are the continuing goals for Are You Dense?

Joe:  Well, it’s funny, you know Prakash, we’ve been at this for 15 years. It’s almost we’re almost numb knowing that we have a national law and it’s what do we do next. And what we do next is education. So, we’re going to work on a national education program so that – we haven’t fine-tuned it yet but that’s our goal is to educate the public about dense breast tissue and since we have a national law backing us, we feel empowered to do this now. So, we’re certainly not going to waste time or money or energy. It’s money well spent. 

Host:  Absolutely. And I just want to thank you again for the work that you and Nancy have done to push so much change and education to the public on this and obviously enact laws as well. What you’re doing here today in sharing on this podcast is actually extremely helpful. I know I learned something here today. So, is there anything else that you want to share with our audience before we wrap up?

Joe:  All I want to say is to wrap up is that this is serious business. Get your mammograms. The ACR, American College of Radiology and the American Cancer Society they recommend at 40 years of age to get screened for your baseline. Make sure you do that. The younger you are, the more dense you are, and I mean breast density. And of course that could apply to the other way too. 

Host:  It could, it could. That’s true. 

Joe:  But it’s so important to get screened and be very attentive to your health, to your breast health. It’s a matter of life and death. It really is. 

Host:  Absolutely. My guest today has been Joe Cappello. I’m Prakash Chandran. Thank you so much for listening. 

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