Breast Cancer Alliance Interview

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Every day you and I get bombarded with negative news. And just like our bodies, become what we eat, our minds become the information that we consume. If you want to stay positive, it’s so important that you also listen to stories that inspire you and uplift you. In this podcast we interview leading experts dedicated to solving the world’s most pressing problems. And if you stick around, I promise you will not only be as informed as if you watched the news, you will be uplifted, inspired, and have more positive energy in your life. Welcome to Great.com Talks With.

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Hi and welcome to day great dotcom talks with Johnny Buttermaker, who is the executive director of Breast Cancer Alliance dot org, and if you haven’t heard of them before, the Breast Cancer Alliance is a private breast cancer foundation, is making a national impact to major investments in early stage research, fellowship, education and support. And if you haven’t done so before, you definitely want to go in to impress, subscribe or subscribe if you’re listening in your podcast app, because today we’re going to learn about breast cancer and why it’s important to take action. Johnny, thank you so much for speaking to Great today.

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My pleasure. Thank you for having me.

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So how would you describe the Breast Cancer Alliance to someone that I haven’t heard of you guys before?

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So Breast Cancer Alliance is a unique foundation. We were started in nineteen ninety six by six friends, one of whom was dying of metastatic breast cancer, and they wanted to rally friends and family in the community to give back. We are headquartered in Greenwich, Connecticut, and originally the organization was a local charity. The goal was to support the town and their neighbors, to give funding to hospitals, to support the breast health care of underserved patients, and to invest in research. And over the course of the last nearly twenty five years, we have now grown to be one of the most prominent national non corporate breast cancer foundations in the United States.

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We continue to fund hospitals to support patients who are underserved, to give them access to care they wouldn’t ordinarily be able to afford or access.

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We are the only foundation who is supporting breast surgery fellowships to help to catapult the careers of surgeons who want to specialize in breast cancer. And we also uniquely fund research, not unique that we fund research, but it’s unique that we fund very early stage, nascent, innovative, impactful research. It’s often overlooked by other organizations who first want to see that the innovation is viable.

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And so we fund what we consider a scientific venture capital to launch really exceptional scientific hopeful projects in the field.

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And that is a power you have, I guess, since you’re a private foundation. Yes. Now, what if you look at breast cancer as a whole? What is something you think the average person like me is unaware of when it comes to breast cancer?

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So there are a few, I would say, common misperceptions. First of all, at this point in time, breast cancer will affect one in eight women in her lifetime. There are certain areas that are more prevalent than others. Certain

demographics that have lesser survival rates, like African-American women, for example, have less successful survival rates. Eastern European Ashkenazi Jews have higher incidences of breast cancer for sure. But I think things people don’t know is that men can get breast cancer. It’s seen as a woman’s disease because it’s so prevalent. But one in just over eight hundred men will get breast cancer in his lifetime. I think there’s also a misconception that if you haven’t had breast cancer in your family, that you can’t get it. And in fact, nearly 80 percent of breast cancer is random. We don’t know why yet. That’s part of the research that we’re doing, whether it’s environmental, whether it’s stress, whether it’s diet, those things are still being explored. But you do not have to have had a family history to be diagnosed. And I think another common misconception is that people think breast cancer is a disease of aging. So often it’s associated with your grandparents generation or your parents’ generation when in fact people can be diagnosed in their 20s and 30s. And so while screening may not be available to you if you haven’t had a family history until you’re 40, if you suspect that something is wrong, you should be going to your doctor and getting checked because it can happen in your 20s. It’s not as likely can happen in your 30s. That is likely, but it certainly happens.

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So I hear that no matter who you are, what age or what gender, you should pay attention. So I wonder what someone can do to keep safe both, I guess, in terms of paying attention, but also in their lifestyle choices.

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So there is no definitive answer to that, which is what’s so frustrating and why so much research is still being done. But it’s the things that, you know, you should be doing or the things that you should be doing.

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You should not be smoking. If you drink, you should drink in moderation and you should be eating a healthy diet, staying away from a lot of processed foods and fried foods. It’s not that you can indulge in life and have a glass of wine and have French fries, but you don’t want that to be your every meal. You want to try to get sleep, which some of us are really good at and some of us aren’t. You want to stay physically active and be exercising at least a few times a week for a half an hour each time getting your heart rate going.

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And those kinds of things are certainly helpful. They can help not only and hopefully in prevention, but also in recovery, living healthy lifestyle practices.

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But the other thing, too, is that you can do self exams. So whether. You’re a woman or your man, if you feel a lump, whether it’s under your arm or in your breast, when you’re in the shower, you should be checking yourself. And if something doesn’t feel right or something doesn’t look right, you should definitely contact your doctor.

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Yeah, that.

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I can see the challenge is full of inspiring people to take action when the symptoms, when the course is a bit vague and the solutions are things that should be done anyway.

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And, you know, and it’s scary and people would rather not know. Right. There are so many things we don’t check ourselves for and hope that they don’t come. But so many women will say that they would never have gone to the doctor, but they felt something that wasn’t right. And so many patients have said they knew they had to be their own advocate because something seemed off. And the doctor, you know, pooh poohed it and said, it’s nothing or you’re too young or doesn’t seem to be anything.

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And they and they went and they pushed and they pushed to get the services that they needed. And and you know how you feel, you know, things are supposed to feel. And so it’s important not to be histrionic and just assume the worst, but certainly to be diligent and for sure to start getting mammograms. If you’re a woman by the age of 40, I know in different countries and different places, it’s easier or harder to access those things. But many places also, if you don’t have the financial capability to have services to support you, which is part of the programming that we provide to institutions, you know, and so those are important. If you do have breast cancer in your family and it’s been in your immediate family, your parents, your siblings, sometimes they’ll consider and and you should generally start getting your screenings done 10 years prior to the age they were when they were diagnosed. So that’s also an important tip. And for men to it’s not a it’s not a mammogram, but you can get ultrasounds and you should certainly talk to a doctor.

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The other thing that’s really helpful and again, I think is scary to people that can save their life is to get genetic testing. So when you are diagnosed or if someone in your family has already been diagnosed with breast cancer, you should get genetic testing to see if you have a greater risk of developing the disease and see if there is

something that you can do before it strikes to be proactive and avoid, you know, potentially being diagnosed yourself. So it might mean that you choose to have a mastectomy, knowing you have a genetic mutation before you’re ever diagnosed. So you don’t have to go through a treatment. It might mean having a hysterectomy if you’re done having children or you don’t want to have children there. They’re very big decisions, but they could be lifesaving. And so having those conversations with your doctor and really knowing your health background can also go a long way to saving your life.

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Yeah, those conversations can be lifesaving. So that makes me grateful that you get the chance to spread this knowledge right here. And for some of them that gets diagnosed, what is the expectancy? The highest expectancy changes if you look back maybe 10, 20, 30 years. Right. Where are we going?

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You know, it’s so interesting. I think fewer and fewer doctors are giving prognosis to patients. You know, it used to be when you heard metastatic breast cancer, you thought it was a death sentence. When my grandfather was 40, he was diagnosed with breast cancer. He found a lump. He had a mastectomy. On one side. They removed a lymph node from under his arm. And they told my grandmother he had four to six months to live. He had no chemotherapy, no radiation. He lived to be ninety seven. He never had her and they were wrong. And those are the kind of stories you hope for. They’re not always the stories that there are. But, you know, I’ve known women who’ve lived with metastatic disease for five years. I know women have lived with metastatic disease for 20 and 30 years. So, you know, the research in which we invest, the surgeons that we helped to propel into the field who are skilled at this and this is all they do all the time, are aware strides are being made. I know one woman who was diagnosed five or six years ago now. She was diagnosed with stage four breast cancer with signs of breast cancer in her liver right at 40 years old. And years ago, that would have meant she’d have six months. Right, or a year. She’s living. She’s thriving. And a lot of that is because just a few months before her diagnosis, a drug came out on the market that exactly targeted what she has. And she’s had years of raising her girls now and hopes to have many more to come. So thankfully people are living much longer and breast cancer diagnoses that are caught early, you can have a 90 percent survival rate. So it’s really, again, that’s where that screening and diligence and going into the doctor and being on top of your.

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This is so critical, but thankfully, you know, certainly not everybody is surviving this disease, but the opportunity to live longer with even a later stage diagnosis is much greater, much improved.

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And what are you hoping for in the future?

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So a lot of the research that we fund is looking at how to stop disease progression. So we certainly look at things like diet and exercise and how that has an impact on breast cancer.

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And we look at new treatments and how they can work in combination so they’re less toxic on your body. A lot of people, you take chemotherapy that not only targets the unhealthy cells, but it targets the healthy cells. And that’s why people feel so rundown and so sick, because your whole body is being compromised. There have been great strides in immunotherapy, which we’re helping to fund, but a lot of it is really looking at once there is a diagnosis, how do you stop that diagnosis from recurring and how do you stop it from progressing there? It’s well, it’s called breast cancer. It’s really breast cancer. There are so many different types and stages. And so there isn’t one cure. So it takes a lot of research to look at all the different types, all the different stages, whether they’re genetically linked, whether they’re not, and which genes and inhibitors and things are helpful to stalling the progression or we’re accelerating it. And so there’s again, there’s still so much work to be done. But those are the kinds of things that we’re looking at, if you are you know, if you do get a diagnosis, how do we stop it from going any further?

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Right. I didn’t know it was different diseases that were kind of grouped into one name that was new for me. So. The Breast Cancer Alliance, you’re doing different things, you’re doing early stage research and fellowships and education and support, like which part there do you feel is the most important that you feel like it’s related? Do you have a core thing that you think this is what needs to be done?

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So it’s a great question. It’s a hard question. You know, we’ve talked about whether we try to do too much.

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We’re still hurt, thankfully, quite a prominent organization and have a wonderful reputation, but we don’t raise two hundred million dollars a year. And so we have to think very thoughtfully about where we’ll be making the investments with the money that we raise in the grants that we fund. And I think, you know, they’re important for different reasons. Right. If you look at research, if there’s a breakthrough in research, you’re potentially saving

hundreds of thousands of lives. But if you give a grant to a hospital for a patient navigator to go into a community that has a very high incidence and high mortality rate from breast cancer, and they go out and they go into the community and they talk to 30 women who either don’t know about breast cancer or just assume once you get it, you get a lump and you die and can say, come in and get a mammogram and we’ll start to follow you. They’re saving lives on the front line. Right. And then you have these surgeons who it’s not to say a general surgeon can’t perform a brilliant mastectomy or a lumpectomy, but they do lots of things. So if you can get a surgeon who only does this, who says, I know that you feel like you just want me to take your breast, but I can save your life if I just remove the lump and avoid you. All of that plastic surgery and reconstruction and multiple surgeries that says something to you, because that’s not only about survival, that’s about quality of life.

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So they’re also important. They just are important in different ways and some are just much more immediate. In other words, research can take 20 years or 30 years before you see anything, if we’re lucky. Sometimes it’s fast tracked and it could take three or four. But the surgeons who are doing these procedures all the time and these and getting these mammogram screening and diagnostic mammograms that are potentially catching breast cancer as much earlier and therefore you land in that 90 percent survival rate, they’re all really important for different reasons. So we have a hard time picking and choosing. We do put the most money into research, but it’s also the most costly.

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I can see the difficulty in choosing because you can’t do everything right now. Speaking of doing things, if someone is listening to this and they want to do something too.

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To help others spread, what should I do? Should I invest? Should I help out research to try to spread the word? What can someone do to help with breast cancer?

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I think all of those things I mean, you know, money, money makes a difference. And so certainly making a donation is impactful. And whether you can only afford to give five dollars or you can give a million dollars. Right. All of it is going to go to the bottom line. We only have two full time staff. We have a couple of freelance staffers. And otherwise, everything else that we do goes to our grants.

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And that’s important to us. About 80 cents on the dollar traditionally is what we’re able to donate, which is a very high number, and we’re committed to that. So the more money that comes in, the more money we can give out and the more lives we can save. So money is certainly number one. And then after that, it’s about spreading awareness. It’s following us on Facebook. It’s following us on Instagram or Twitter. It’s sharing stories that we share. It’s signing up to attend our events, whether they’re fun events and you live locally and you can golf with us or you have young kids around the country and you can do our charity Family Game Night or this poker tournament. Last night we had players from outside the country to which was super fun, but we also have educational events. And so you can sign up to get our newsletter or you can join some of our medical symposia. So much is virtual now that whether you’re in Stockholm or you’re in Connecticut, you can participate in some way and you can gain access and information and be a part of the solution. And so that’s that I would say one silver lining to covid is that it’s it’s an easier way to bring people together from all over for a really good cause.

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Yeah, and, uh. I sense the community feeling you are building within your organization, so, yeah, I hope someone listening to this is willing to be a part of the solution and follow your grace on social media or even maybe make a donation.

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The nice thing about having a small staff is there’s always something we need help with. So even if it’s just a great idea for something to do, you know, and so people can reach out.

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The website is Breast Cancer Alliance. Doug, you can email info at Breast Cancer Alliance, Doug. And it doesn’t matter where in the world you are. If you want to help, just tell us you want to help and we’ll help you explore, you know, how to do that.

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And I will say, you know, we talked about this a little bit earlier, but during the pandemic, it’s been really challenging to raise money. It’s certainly been near impossible to get anybody together to do anything. And so but breast cancer hasn’t stalled, right? I mean, people are still being diagnosed at the same rates they were before the pandemic, but now their surgery might be delayed.

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The level of fear and anxiety that they have about going to get treatment walking into a hospital and their systems

are already compromised. You know, it’s a very scary time. It’s a really difficult time. And covid just adds this extra layer, not to mention all the people who’ve lost their jobs or lost their health insurance or had to take tremendous pay cuts.

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And, you know, now more than ever, it’s it’s also important to support us and to support the work that we’re doing, because there are there are just rising numbers of people who need our help, especially every day.

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You know, I couldn’t agree more. And we’re running out of time. But, Johnny, thank you so much for taking the time to speak to a greater column about breast cancer today. I really appreciate it. Thank you so much for having me. Thank you. And for you listening. If you found this conversation meaningful and you want to help out, somehow what you can do is you can go into YouTube or your podcast and press subscribe. That would really help us let the algorithms know that more people should listen to these kinds of conversations so we can spread the information and get the knowledge out of there.

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Thank you so much for listening and we’ll see you in the next episode.

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