Hello and welcome to Breast Cancer Conversations, a podcast brought to you by SurvivingBrestCancer.org.
I am Laura Karfeng, Breast Cancer Survivor and founder of SurvivingBrestCancer.org, a
non-profit organization providing community, education and resources to empower those diagnosed
with breast cancer and their caregivers from day one and beyond.
Hello, hello, my friends. Welcome to another episode of Breast Cancer Conversations. I am
excited, as I always am, for our amazing guest that we have the opportunity to speak with
and bring on the show. Today, I am joined with Sherri Biller, who is an incredible philanthropist
and has done decades of work in the cancer space. So I am just excited to kind of talk to you,
Sherri, kind of learn a little bit about how you got into this space and how you've kind of seen
the work around supportive cancer care evolve over the years. Welcome to the conversation.
Laura, thank you so much for having me. I love sharing my story and I love sharing it too
from Seattle, Washington. Excellent, excellent. Yes, we have a big following all over the U.S.
and in most English-speaking countries, but we are also now offering all of our programs
and services in Spanish. So that has also expanded very nicely throughout South America as well.
So I just want to dive in, first of all. I understand this foundation that you and your husband started.
Was there a pivotal moment that kind of was the catalyst for starting this work that you're doing?
There was. There was. 35-plus years ago, I lost my two best friends to breast cancer.
Importantly, to preface all that is to say that I'm an only child and if you know any only child,
other only children, you know that friends to us are the sisters and brothers that we never had.
We don't let a lot in, but they are the most important people that we have.
I lost my two best friends to breast cancer and so many, many years ago, I was taking care
of both of them as well as their families. One lived in Minneapolis and one lived in Los Angeles.
Both of these girls were from families of wealth and my girlfriend in Los Angeles,
both of her parents were doctors and very successful doctors in Los Angeles.
And in both families, the suffering of the families, what happened to the families, the parents, the children.
In one of those families, there was a suicide of a child because nobody was speaking to them.
Nobody was giving them any information.
And to say 35 years ago how this affected me, it was a super traumatic experience in my life
as anybody who has lost someone they loved.
And at that time, I was rolling over in bed saying to my husband,
if we ever, ever had any resources, we have to do something about this.
How do we help these families? How do we help them to get through these diagnosis?
It's not only the families, the friends, the loved ones, anyone connected.
And so as happened, we were lucky enough in life.
And in 2001, we started the Biller Family Foundation with the intent to open a center somewhere
in a cancer center in America to help these families and their loved ones.
And so in 2008, we opened the Biller Center, the Biller Family Resource Center at City of Hope in Duarte, California,
specifically to offer resources to help families, loved ones, and patients going through cancer.
Thank you for that work that you've done.
And I'm so sorry to hear of the loss of your friends as well.
What was going through your mind when you got that phone call or heard from your friends when they disclosed to you
that they were diagnosed with breast cancer?
It was such a long time ago. You remember that people were not as lucky at that time as they are today.
We didn't have the diagnostic tools that we have today that will help early detection,
which is such a critical thing in survivorship.
But that was, for me, both of the women were not facing what they were told.
The language that was being used at that time was so scary to everybody
that I don't think we really understood what it meant.
We didn't have the benefit of understanding what we understand today because of people being educated the way you are doing right now.
This very minute is educating the public on what all of this means.
So I think that going through that, and I say that there was collateral damage, collateral damage to that diagnosis, to breast cancer diagnosis.
Even in survivorship, there's damage that we don't deal with, the mental and psychological issues that come along with that diagnosis.
Tell me a little bit more about language because I'm sure it has also evolved over time.
Any time that someone hears the word cancer, I think it almost goes into this like,
your world gets flipped upside down and you almost stop absorbing anything else that comes after that word
in terms of how physicians are trying to help us navigate the next steps or what does this mean.
So just being able to take a pause and let that settle in before we actually jump to the next step.
But can you give me some examples of maybe some of the language that was being used that caused kind of this fear?
I think that the language doctors use, first of all, the word cancer is paralyzing.
Just a patient or a loved one hearing that. And I think that people tune out the minute they hear that because of the fear.
And so what we're trying to do is educate people to understand that they can thrive living with cancer.
And the words that we're using now, supportive care, is language that people don't turn off to.
We always worry about the words palliative because patients immediately think of end of life.
And so when we think of supportive care, there are two P's in there.
And of course, palliative is part of it. It's a palliative is a clinical specialty that, of course, we need during during.
But it doesn't mean what patients think it means.
So we're trying to educate everyone on the word supportive care and what the wraparound services that that means
and what's offered to them so that they can hear what doctors are telling them.
Absolutely. That's such a really good point.
And even talking about the difference between palliative care and hospice,
I think are two things that sometimes people see as synonyms when they're really quite different in standalone services.
And now where palliative care and these supportive services are now part of, you know,
you've been diagnosed and here are all the resources and tools to help you navigate pain management
and these tough, difficult conversations and choices people are going to have to make around their treatment.
So I think that's really important to bring to light that, OK, here's supportive care for you as like a tool in your toolbox.
And to educate everybody to be able to ask for it since people are not familiar with the word supportive care
or understand that there are resources for them to help them get through their diagnosis to get through their treatment.
It's so important to teach people to be able to ask everyone, their doctors, their clinicians,
all the services in the community who can actually assist with the support that they need while dealing with a cancer diagnosis.
Absolutely. So what are some examples?
You know, I know when we think about palliative care, it's not necessarily equal to, you know, end of life.
Like, here are like the support services for people.
And when we think about the work that we're doing at survivingbrestcancer.org,
we're providing a lot of that like emotional health and wellness support to the patient
because we understand that we're not physicians, we're not doctors, we're not trying to be.
We let the oncologists take care of the cancer.
But then there's a community of people who have these lived experiences to make it seem like, OK, you're not alone going through this.
Or yes, I had, you know, a breakdown the other day for no absolute reason
because I'm on these hormonal therapies that make me go crazy, right?
And so we can kind of laugh about what we're going through, but in this community of comfort and support.
I think that it's so fantastic that you are doing this to the population that is listening to you.
I would love for you to be able to get this out to everyone because my biggest worry is about the underserved communities.
Yes.
The underserved communities in America have such little information
and the fact that you're translating this into Spanish and getting it out to the Latino community is fantastic.
But the underserved communities are suffering so much.
How do we get sort of supportive care and educating supportive care to every zip code in America
so that people understand there actually is help for them?
Yeah.
So this is right now one of the biggest focuses that we're working on,
both at the foundation and the coalition that is together for supportive care that we started a year ago.
Okay, excellent.
And so you're working with other nonprofit organizations as part of this coalition.
Tell me a little bit more about that.
The coalition has brought together pharma, corporate America, policy, the large cancer hospitals in America
to work together to tell communities what resources are available, how to get them, how to change policy to make payers pay for them.
So that people don't have to do this out of pocket.
Yes.
Even in your own experience, you think about all the things that you were able to get for yourself if you could afford to get it for yourself.
But we want it to be a standard of care.
And so they're working together to figure out how to make supportive care a standard of care.
That's brilliant.
Let me know how I can help and support those efforts and get involved.
You know, what's really interesting about my story and my listeners know I was treated in Boston.
I'm in Boston right now.
And despite the tragedy of cancer, I was like, well, if I'm going to get sick, at least I'm in Boston.
I have access to some of the best medical institutions in the world.
And it shocked me how siloed these hospitals are.
If you're not being treated at X, Y, and Z hospital, you don't have access to those supportive care systems.
And we're here in Boston, and it's like literally across the street from each other or different things, right?
It was very siloed.
And so when we started surviving breastcancer.org, I was like, what about all the other people,
like 80% of the people that actually don't live in these major metropolitan areas
and didn't have access to, you know, support groups or nutritionists,
information about understanding weight management, understanding exercise, oncology,
how that can really help manage fatigue and different symptoms.
And so all of our programs that we offer are 100% virtual and online.
So, yes, I understand that everyone has access to the internet, but most people these days tend to.
And so it's okay if you're in the middle of X, Y, and Z town or state or zip code.
And, you know, unfortunately, you need to travel hours to get to your appointments on your laptop,
on your cell phone, on your tablet, you have access to these virtual services.
And so that's, you know, part of the thing that we're trying to break down as well.
But please continue.
Yeah, it's so critical because what we don't want, and what I'm afraid is happening in medicine today,
is that a cancer diagnosis is becoming a lead-us disease.
And only those who can, who are using technology every day or know how to use it,
actually can go into it to find resources they need.
In reality, for the rural communities that have so little benefit of excellence and access
and everything that you just said, we need technology, but we need to educate these communities
how to use it and what to look for to understand that there actually is help out there for them.
And, you know, the psychological implication of being alone in a cancer diagnosis is so devastating,
not only to the patient, but also to the people around the patient, just to have someone there to help them.
And so anything that is being done that can get out to these rural communities
and the communities of need to give them this information is critical, absolutely critical.
One of the things that I have run into, and I'm curious about your experience,
is even in some of these rural communities, and I also see this in the Latina population
that we're trying to support, that, you know, we can be talking about it.
We can be trying to go and provide education.
We're going into schools and colleges and, you know, talking to people.
But so many families don't talk about cancer.
So many families don't talk about even health risks, right?
And so it was very interesting, and I'll just use, you know, my personal experience,
you know, white middle class, upper middle class woman here, like living in Boston.
I didn't think I had family history of cancer in my family because my family never talked about it.
You know, if aunt so-and-so couldn't attend a birthday party or wasn't feeling well,
it was just she wasn't feeling well. It wasn't because we actually knew what she had.
It was very close to the vest, and it wasn't until my own diagnosis
that my mom actually, like, wrote out, like, this long word document
of here are all of the elements on the side of the family.
And it prompted me to get genetic testing.
It prompted me to do a little bit more research and be an advocate for my own health.
But then it also dawned on me, like, if people aren't talking about the family history of cancer,
then we can't tell our physicians, we can't tell our primary care,
or we wouldn't know what symptoms to look for.
So I'm not sure if you've experienced similar things, too, about people just not being open or receptive,
or also, I would say, you mentioned a little bit about, like, the mental health side, too,
the shame that can come with a diagnosis.
Yeah, the societal issue around this is huge.
So you have the issue of not trusting government, not trusting doctors, no trust.
So one of the best ways to fix this, I believe, is to use the leadership in the faith communities.
The leadership in the faith communities is where the general population has their trust.
And we need them. We need them to help us get this information out there.
Any of the diverse communities, in my opinion, is one of the best ways to give them help
and to help educate their population and their communities on how to do this
and worry about non-diagnosis in the diverse communities in America is huge.
It's just huge because, especially in places where men don't want to know about their own diagnosis
or their own issues, no less the females in their lives.
They don't want to deal with that either.
So the worry is mine as well as yours.
And we're all of us in the coalition as well as in the foundation are trying to figure out ways
to gain access into these communities.
As white women are privileged, we can't do this alone.
Right, exactly.
We can't do this alone.
What about the financial aspect of a cancer diagnosis?
We talk a lot about the financial toxicity of this diagnosis.
And for us to be, again, fortunate, having health insurance, that's always a plus and a win.
But we talk to a lot of people in our community as well.
It's like, well, how can I come in for treatment once a week when I need to pay for childcare,
when I need to pay for parking, when I am actually literally considering medical bills
over rent and food on the table for my family?
So that's, I think, another aspect of supportive care services of just saying,
okay, here are the organizations and the foundations that people can apply to.
But not just, I would say, giving them, here's the list of paper and go forth on your own.
But you're actually talking about the tools to say, okay,
let me help you and guide you through how to get access to this information and these resources.
I think there are a lot of nonprofits in the United States right now.
They're doing different pieces of what you just described.
The general public doesn't understand that that's out there
or that there are places to go to help, but there are places.
And so then we keep going back to technology.
How do we give them the where to go within the technology
so that they can get the answers for their needs?
I mean, all of this, even something simple is just having someone to talk to,
having someone to babysit so you can go to your appointment, right?
And work, what do you do about work?
If you have appointments and you need to go in for treatments,
I mean, these issues are just huge and the fear that comes along with it,
the psychological part of it to me is one of the biggest issues that we have
in cancer diagnosis right now today.
Yeah, and you bring up such good points too about how do you tell your employer?
Is there going to be retaliation?
Can you take time off?
And I was just talking to a woman the other day,
exactly what you were mentioning.
Somehow through the stars, someone got connected and was like,
"Oh, you are recently diagnosed. You need to connect with Laura.
Let me give you contact information."
We ended up getting together in person for lunch here in Boston.
And she was just so overwhelmed even being in a metropolitan city of like,
"How do I figure out what resources are available to me?
And how do I know which resources I can trust?"
Because unfortunately too, with technology and the internet,
there are people that prey on cancer patients.
I'm saying, "You need all these supplements in the world
and I can cure you and I can do all these things.
And if I don't know any better, you know, I'm overwhelmed with information."
Yeah, I think that the mistrust issue is so big.
Back to the trust, yeah.
Something as simple as just talking to a friend and reaching out.
That's not as easy for everybody as you and I think it is.
I mean, you and I will pick up the phone and call anybody.
But for a lot of people, that isn't an issue.
So just to have people to be able to recognize that somebody is having an issue.
They may not know what it is, but just to be there.
To be there so somebody has someone to talk to.
And as soon as you start talking, people say, "Did you know about?"
Or, "Did so-and-so ever talk to you about?"
I mean, as soon as you can get into a dialogue, help somehow shows up.
But how do you get people to talk about it?
In the Latino community, that is a huge issue.
Trying to get people just to talk to each other
and not to be afraid about everything.
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Exactly, exactly.
So, we talked a little bit about the patient side of the support.
What are you noticing on the family side and the caregiver side?
I think the caregiver side is the most critical thing
we have going on in America right now.
My biggest focus is how do we train youth to know
that at some point they are going to wind up being caregivers.
It might not have been this way 30 years ago,
but I keep thinking that we need some kind of teach for America now
for caregivers so that we teach young people how to do this job, this huge job.
So, I'm looking for a way to get people involved in how do we reach out to youth?
How do we let them know that being a caregiver is going to be in their future
for someone that they are having their life where they love?
Yeah, we hear a little bit about that now too.
We're kind of like this sandwich generation of taking care of elderly parents
as well as having young ones who are getting off to school
and you're kind of like burning the candle on both ends here.
But then to complicate that with a cancer diagnosis,
it's already overwhelming for the patient as the caregiver.
I know my husband was amazing when I was being diagnosed with breast cancer.
He didn't even have the fear that he was going to leave me,
but apparently, I just told him.
I called him on that day when I got my biopsy and was like, "Oh my God, I have cancer.
I'm calling him for work. We need to figure this out."
It was just like my type A comes out and I'm like, "We're planning.
We're getting all the information. We're doing all the things."
But it didn't dawn on me once that by telling my husband that I had breast cancer,
there could have been a very different conversation
that I know a lot of people actually experience, which is,
"Gosh, I don't know if I can handle this.
I don't know if I can be here for you or strong here for you.
What does this mean for our sexual relationship and intimacy?"
And it becomes this very contentious conversation as well.
I was very grateful for that, not being my experience.
But you think about how the family unit is,
and then when you bring in something as complicated and delicate as cancer,
what that does to a family dynamic.
I think when you're faced with something like that
and you don't know anything about it and you don't know what to do,
I can actually understand why so many people bail.
People bail out. They just have nowhere to go.
They don't know how to handle it.
And so, how do you, this is, do you fix that?
I think we go back to educating again.
Yes.
It's just such an important thing that we need to do.
And men need to, especially with the male generation coming up,
we've given them so much the idea of having to give back.
That's something that worries me as well.
So, I'm very, I did a written piece about male breast cancer,
for breast cancer, right next month,
because people don't talk about male breast cancer.
And in fact, it is quite a, not a unique diagnosis in breast cancer.
But dealing for a male to deal with that is such a dramatic and traumatic experience.
Just educating the public on something like that.
I know with my own grandson, who is 27 years old,
when I told him that men get breast cancer, he was completely shocked.
Totally shocked.
So, we need, you know, we need people to talk about that as well.
Absolutely. I've been doing a lot of lunch and learns webinars this month.
And same thing.
I start off with my little poll and trying to assess what people know and don't know.
And, you know, I think I have a slide about, you know,
men can get breast cancer or can't get breast cancer,
just like women cannot get prostate.
And usually when men get breast cancer,
they're diagnosed so far along because they don't know where to look for a lump
or they don't know what's bothering them.
You know, the end result for a male breast cancer patient is even more devastating
than today for a woman, since we have the technology
and women are so, you know, used to going in for their mammograms.
We're catching things a lot earlier.
Absolutely. Absolutely.
Well, it sounds like you have a lot of great work on your plate.
What is on your horizons?
Well, I'm hoping that health systems will grab on to some of the things we're doing
to make the journey for patients easier to give them the information they need
without patients struggling as much as they're struggling.
The technology is going to help.
I mean, even with all the negative pieces about AI,
AI for medicine is going to be incredible.
We're going to be able to diagnose things in the future that we haven't been able to diagnose.
So my hope for cancer is that all of this will come to light.
And I think I do believe that the technology is going to happen for us very quickly.
And I think also it's important just to say that we're talking about supportive care
and we're talking about it for cancer.
But supportive care is necessary for any life-threatening disease,
any life-threatening disease that anybody is facing.
We're talking about the help that they can get from benefitting from understanding what this is.
Yeah, absolutely.
Where can they find more information on the work that you're doing?
I think that if they look for together for supportive cancer care,
and there will be so much to see on that website and our foundation website as well,
and to ask wherever they're getting treatment,
as many as they can possibly think of to please don't be embarrassed to ask,
please feel free to ask.
It's not that your doctor doesn't want to give you the information.
It's just they're so focused on your treatment and will help you that they're not thinking about the other side.
I always ask.
Totally.
I always tell my medical friends too.
It's like we really want to be an extension of the work that you're doing.
You're there, you're focused on getting the cancer out and supporting the patient.
But the moment they walk out of your door, they are like,
"Oh my God, what just hit me and where do I go and where do I turn?"
So if you can give them a reliable referral or a pamphlet or a web address
or a person, as you mentioned, that they can call and talk to you when they're ready for it,
is really a game changer.
It is.
It's one of the topics that we haven't talked about that you want to share with our listeners.
I feel like we just kind of scratched the surface a little bit,
but also went deep very quickly in the great work that your foundation and coalition are working on.
I think that we could go on for hours talking about a million different things.
But I think maybe we hit on the most important topics for this particular episode
and we could talk again and go further about other pieces of it.
I feel like you were mentioning some of the work and how you brought in all of the stakeholders, right?
So you have government policy, the payers, pharma, et cetera, industry.
So I think that soapbox can definitely be a follow-up conversation.
I'd love to chat with you a little bit more on that too.
And for everybody out there just to know this is the first time ever
that these groups have sat in a room together all knowing the same issue, the same problem.
But coming together to work on it as a team has been a game changer.
- Incredible. Congratulations on that. - Thank you.
Sure, it's been a pleasure speaking with you today.
Thank you for taking the time and sharing the great work that you're doing.
Thank you.
And thank you everyone for listening to our show.
I would like to acknowledge that all of the information on our podcast is from personal experiences
and is not a substitute for professional medical advice.
You should always contact your medical care team.
If you are looking for specific topics or would like to be a guest on our show, please feel free to reach out.
My email is
[email protected].
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