- Just ahead on Black Issues Forum, Breast Cancer Awareness Month is October, but it is a year-round concern for many.

That makes it a year-round mission for the Sisters Inspiring Sisters Inc. We'll learn about their work, and also talk to a family physician and cancer epidemiologist about the latest in breast cancer prevention and treatment, stay with us.

[upbeat music] ♪ Welcome to Black Issues Forum, I'm Deborah Holt Noel.

Throughout the year we run five Ks, wear pink ribbons and donate millions toward research with the hope of finding a cure for breast cancer.

Still, it remains the second-most common cancer among American women.

And that is why the work to support those diagnosed with breast cancer is so important.

And our next guests have dug right in with innovative ways to help.

I'd like to welcome Terry Spicer, founder of the Sisters Inspiring Sisters nonprofit.

The SISI launched 10 years ago, fighting cancer, as she says, one mile at a time.

Also B. Jacqueline Jeter, the Encouragement Ambassador.

Jackie is a life coach, a minister and vice chair of The SISI Board of Directors.

She's also currently fighting a cancer battle of her own.

Welcome to both of you, so pleased to have you with us.

And Terry, you know we had an opportunity to share your work with The SISI in an episode several years ago.

And you are growing strong.

So please tell our viewers why you say we fight cancer one mile at a time.

- Well, first of all, thank you so much for having me back.

It's a joy to be here.

But we are still fighting because transportation continues to be the number one barrier.

If you can't get to treatment that's well planned, then your chances of successful outcomes is very limited.

We've seen that the need for transportation, these patients remote areas, no matter your stage in life, you have to be able to get to your chemo, your radiation, what's prescribed by your physicians.

So we are going to continue to fight to help as many patients as we can.

- And how did you get started?

Why did you start up The SISI?

- Well, I started because my best friend, we called each other "sissy."

She was a breast cancer patient who was a fighter.

I was blessed to be able to drive her with her mom every single day the last year of her life to UNC Lineberger Cancer Preventive Center in Chapel Hill.

And I saw there the vast need, because people were coming in every single day asking for assistance.

So my witness, my experience with her, led to that seed that was planted in my soul.

And I'm committed to helping cancer patients.

- So with The SISI, you're providing gas cards to help them with transportation to get their cancer treatment.

But you have expanded your work to a new campaign.

Talk a little bit about that campaign.

- The Lift Your Pearls & Check Your Girls Campaign was launched last October, actually a year ago, because Black women die at a 42% higher rate than any other race or ethnicity.

It's an alarming rate and we've got to break that up.

So you know, it just got dropped into my heart to help a million women through education, awareness and support.

And since we launched it last year, more than 400 women across the country have indeed lifted their pearls and gotten their girls checked.

So the work is immense, but we are so committed.

- And Jackie, tell me a little bit about how you're working with Terry, and just, you have been brave apparently, in your fight against breast cancer, so very best wishes to you.

But tell us also about your work with the SISI, and Terry.

- Again, thank you for having me on today.

I've been working with the SISI for several years and seen her grow, so to speak, through those times.

'Cause I have a passion about breast cancer advocacy 'cause I had two sisters that had breast cancer.

And they've passed away.

And so I was working with that, not knowing I was gonna have my own battle, my own battle myself.

But I'm very passionate about helping, continue to have awareness about breast cancer research and breast cancer awareness, but also driving funds and making sure we get enough funds so that we can ensure that the SISI is a well oiled, self managing machine.

Being able to bring in the help that's needed to keep things going.

So driving funds and driving awareness to ensure that this particular, very important and necessary initiative continues on.

- Well can you share a little bit about, as someone who unexpectedly had to enter a battle with breast cancer.

Now you yourself know some of the challenges, and you know what the work is of the SISI, has anything changed?

What's it been like for you to be the recipient of some of these services?

- For me, I'm a career scientist, and I actually am doing pharmaceutical development now in oncology, ironically.

But for me, I have that background to understand different kind of drugs that, that I had to take.

And so when I was diagnosed, I always say I won a lottery.

That wasn't, not the lottery I wanted to win, the one in eight lottery, 'cause one in eight women are diagnosed with breast cancer.

It was shocking.

But I've had, and been blessed to have an amazing support system of friends and family around me.

And as I went to my infusions, and I've gone to doctor's appointments, and you see people there who are waiting for either transportation or not knowing how they're gonna get home or hearing someone say "Oh that person's not gonna be here today" "'cause they couldn't get a ride in."

It even creates even more passion to see the SISI to be solidified as that go-to for cancer patients to get them to their appointments.

'Cause you can't get to your appointment, it impacts you not just physically, in being able to get the treatment that you need, but mentally and emotionally.

Breast cancer patients go through a lot of mental and emotional stress.

Not just the fact that their body's changing, but the things that they... is this pain, is that cancer coming back, or is this something else?

So it's a lot.

So that's why I'm even more impassioned to help the SISI and bring awareness, and help with funding and making sure we have that so we can help those persons who don't have a support system.

Like I said, I've been very fortunate to have that support system.

I'm fortunate to have the background from a scientific space to know, or to project or understand what my physician's saying to me, what my nurse is saying to me, or what might happen to me.

And to be able to ask the right questions.

So my experience has been a, I'm gonna say a little different.

My diagnosis was HER2 positive.

A lot of black women are diagnosed a lot of times with triple negative.

So there's that disparity, and I'm sure the physicians will get more into that because they're very well qualified to talk about that more so than I am.

But for my experience, it makes me even more...

I keep saying passionate 'cause I am very passionate about this, to make sure that patients get to where they need to be.

And the SISI is a very strong vehicle in getting patients to their treatments 'cause that is extremely important.

- Terrific.

And Terry, you're coordinating a network of SISI Pearl advocates to add to the work that you're already doing.

What's their work gonna encompass, and why is it so important to have these advocates, and are you still recruiting?

- Absolutely.

Because we want a network across the country.

They need supports.

They need to know the resources that are available.

We will not be involved in recommending physicians or medical staffs, to folk who are going through.

But it is definitely important that people know that there is a safe space, that they can rest.

It's gonna be a network of survivors, and cancer patients, and caregivers who will provide tools and tips.

And we'll have guest speakers on.

We'll have a prayer line.

So we wanna be a well rounded machine.

Like Jackie said, I love when she said that.

Because again, gas cards provide a pathway to treatment.

So it is all intertwined in every single thing that we do, we want these cancer patients, and caregivers and survivors to know that the SISI provides this pathway to treatment.

And so we are committed.

We want women to get their mammograms.

Mammograms don't prevent breast cancer, but it certainly helps to position them better to win over the disease.

So the advocacy program is going to be a, a all encompassing process of support for them.

- And getting that check and doing the prevention work is so critical.

Interestingly enough, Terry, you have another program called "The Small Pearls."

- Yes.

- And it's extremely rare, but one of your girls had a bought with breast cancer.

How'd she handle it, and and how were you able to help her?

- The most incredible thing.

By the time that she came into The Small Purse LEAD Academy, which is a mentoring leadership development program for girls seven through high school, she'd already come through it.

So when we had, during that month maybe two years ago, talking about breast cancer awareness because we want our girls to understand.

When she stood up and told us that she had gone through breast cancer at age 11, it stole all of our breaths, all of our hearts.

There wasn't a dry tear in that room.

She just kept saying that she felt a lump.

And her mom dashed her to get it checked.

And when they got the call to come back and they went through these rigorous tests, and when she got that call to say, "Yes.

This is indeed breast cancer," it was life changing.

But thank God the treatment that was made available to them, she's cancer free and now she's a thriving student at Winston-Salem State University.

So it affects women who are 85 years old, little girls who are 11 years old.

It affects men.

So it's really truly important, the work that we are doing.

And again, driving the fact that we need to make breast health a priority because many people don't.

- And just paying attention to your body, having communication with someone who cares, which is what the little girl was able to do and what so many women need in their lives is just someone saying, "Hey, listen girl.

Go get your mammogram.

Go get your your work done".

And sometimes that's the impetus that really drives you to say, "Okay, I'll go ahead and get it done".

And, you know, there's so many of us who know someone, unfortunately, who is dealing with breast cancer, and we wanna help, we wanna give something.

Jackie, what would you say is the best thing, or some of the best things that friends and family can do to help survivors through?

- To just be that support to them.

Your body changes so much.

There are things you can't eat, there's different things that you can't do anymore, and not to treat you like you are an invalid or that you're gonna die.

To be there, support you in any way that you can, and to encourage and for them to actually go and get a mammogram.

To get a diagnostic mammogram.

You may...

Sometimes mammograms aren't enough.

You may need to have an ultrasound coupled with that because for me, I got my mammograms initially after one of my sisters passed every six months.

And then it was a year, and so from the time that I had my previous mammograms to the time I had felt that weirdness in my breast is breast cancer was there, you know?

So just how you can support someone who is going through it is to treat them normal.

One thing that I had, it's hard for people who are caregivers, it's hard for people who are friends to see someone who is their good strong friend go through this, to lose three feet of hair like I did, to be able to you may lose a lot of weight, to go through the pains that you go through 'cause the chemo can be, it is very debilitating to your body.

But the thing that helped me is that my friends and my family, they were there to support but they supported in a very compassionate and realistic way.

Not making me feel like, you know, I couldn't do certain things or, you know, you can't walk you can't do this, I'll do that for you.

And that was supportive but it also kinda messes with your psyche if you're used to being that strong person for someone.

So just support them in the way that they need to, and listen to what they're saying.

But also be that person that is championing your own health as well and taking care of yourself.

- Jacqueline Jeter, thank you so much and very best wishes on continuing your battle against breast cancer.

Terry Spicer, thank you also for the work that you're doing, and I just wish you wish you both strength.

- Thank you so much.

- Thank you.

- With all the work and awareness around breast cancer, people still have questions, even the most basic, around what it is, how it's treated, and how it affects black patients differently.

Here to answer some of those questions, I wanna welcome Dr. Nicole Swiner, a family physician and author focused on minority and women's health.

And Dr Tomi Akinyemiju, a cancer epidemiologist and associate professor of population health and global health at Duke Global Health Institute.

So excited to have you with us as well.

Doc Swiner, in the simplest terms, can you share what is cancer and how does it affect the body?

- Cancer begins with a malignant abnormal cell that then grows uncontrollably and spreads to other parts of the body, essentially.

And it comes in different forms, variations, affects different parts of the body, different organs.

And once that malignant cell becomes an issue in other areas, you know, or metastasizes, it becomes an even larger issue.

So it's a very serious thing.

- Dr. Akinyemiju, to treat cancer, many are probably familiar with surgery, radiation, or chemotherapy.

Are these still the most effective options for breast cancer treatment and have there been advances?

- Yes, thank you so much for that question.

There have been significant advances.

We've seen substantial improvement in survival over the past couple of decades.

We've seen that new approaches with surgery and chemotherapy and radiation have been having significant impacts in helping women with breast cancer live longer healthy lives.

In addition, there are significant advances being made in new modalities of treatment, including targeted therapies, immunotherapy, and other treatments that are very specific to the tumor type and the tumor cell.

So a lot of work has been done to understand what is unique about the specific cancer that each person has.

So this is what we call personalized medicine.

And by understanding what's unique, which gene is mutated, or which protein is being over expressed, specific treatment types can be offered to those patients that target their specific cancer types.

And a lot of work has been going on in that area to advance treatment effectiveness.

- Well Doctor Akinyemiju, you certainly have the science and the knowledge about this subject matter, but share with us a little bit about your personal reasons for exploring cancer as a disease, but also your specific focus on understanding how this impacts black women.

- Thanks, that's a great question.

You know, I got into this field, you know, I started during my PhD.

I was really interested in understanding why certain groups in the population do better than other patients even with the same disease.

As Terry mentioned earlier, for example, in breast cancer, black patients have still about 40% higher likelihood of dying from their cancer compared to white women in the United States.

So with all of our kind of economic power and political power and all the resources that we have, I found that very troubling.

And a lot of my work is focused on understanding what is driving that disparity because if we can understand why, you know, some patients do a lot better than others, then those are strategies that we can implement to make sure that we eliminate that gap.

We understand that the reasons and the causes of that disparity is complex.

It's not one single thing.

There are social factors, there are things about access to care, and the work that the CC group is really outstanding that will have substantial impact in that area.

We know that there are also some biological differences.

So as was mentioned earlier, different subtypes of breast cancer affects black women differently.

So the triple negative breast cancer, which is at this time unfortunately, less amenable to current therapies, tend to be more common among African American women.

So we really need more science and more research to figure out what is driving that particular sub type of cancer, and how can we develop more effective better therapies to help black women.

- That's certainly from what I understand also and Dr. Swiner, you can confirm too, the triple-negative form that hits Black women and affects them more dramatically than other groups.

But I also wanna talk about another form of treatment in hormone therapy for both cancer treatment and prevention.

How has that impacted or does it impact the various forms of cancer and particularly triple-negative?

- Absolutely.

Black women, unfortunately are probably three times, if not more likely to have triple-negative breast cancer.

And it's a much more difficult diagnosis to treat.

And Dr. Tony was mentioning about needing more science and research.

What we're trying to do and what I'm working with now, particularly with Wake Research is trying to help us get more access to these research studies so that we can learn more about how these conditions affect Brown and Black populations in particular so that we'll know what types of treatment can be more effective.

So it's very important for us to involve ourselves safely and hopefully have more trust in the clinical research system so that we can have more access to care and have more information behind what works particularly for Black women.

- Well, Dr. Akinyemiju in many ways as you mentioned, cancer does not discriminate, yet we see the disparities at outcomes for Black women, with Black women, 41% more likely to die from breast cancer even though the incidence rate is lower.

And once again, a lot of your research looks into this.

What can you share about what's accounting for the difference?

- Sure.

We together with colleagues from several cancer centers across the country including at Duke, have been really paying attention to this question about access to care, right?

We know that when patients receive high quality treatment that is evidence-based and supported by science, they do better.

And one of the questions we're asking is, why is it that some patients are likely to receive the highest quality care that is relevant for their tumors?

And we find that it's also a complex mix of factors that are involved.

We think of healthcare access typically as the financial aspect or being able to find a doctor that can treat you.

And those are really critical.

We know that cancer, in addition to the burden on health, physiological health, that it exerts a substantial financial burden as well.

We've talked to patients who have delayed paying rent, paying their bills, dipped into savings, retirement plans in order to be able to afford their cancer care.

So there are financial difficulties associated with the diagnosis like cancer.

But in addition to that, there are transportation issues as we've mentioned.

Being able to get to care is so critically important especially when it's a complex regimen, you have to go in many times.

There are other factors as well and one that has really struck with us, that patients, especially African American and Hispanic patients as critical to their treatment journey, in their cancer treatment journey, is this acceptability factor which is the quality of the patient provider interaction.

So being able to have a provider that is caring, that's empathetic, that has patient-centered communication and thinks about the whole patient, and how they're doing, and how they're dealing with the cancer, in addition to making sure that they get the best treatment at the right time, is so critically important.

Patients talk to us about that feeling of when a provider listens to you carefully, is respective of your culture and your background, puts their hand on your shoulder to let you know that they're in this fight with you.

They will do everything possible to make sure that you get through this.

That's even more important than which hospital it is, what training they have, what other factors, is so key to helping patients feel that they're being cared for and they're getting the best treatment.

- And Dr. Swiner, I'm sure that you have experienced feedback from your patients, but also you get to communicate with others in your field.

Colleagues.

Talk a little bit more about this.

What might be implicit bias in the field and what the patients are experiencing, what their communicating back to you, and what your colleagues are communicating to you - Particularly from a primary care perspective.

I'll see my patients as we're trying to screen, as we're diagnosing, and then while going through treatment and after treatment.

And some of the issues that I encounter or have encountered particularly for our Black women has to do with the strength of the Black woman, works both for and against us.

And particularly when it comes to us when we're sick or having pain, sometimes our pain or our issues aren't taken as seriously or there's a bias of Black women being able to tolerate more.

- And we just talked about that on our program a few weeks ago, talking about fertility and infertility.

- That's right.

And so my Black women, the patients that are dealing particularly with things like cancer, with any chronic illness or an issue that they're going through, that's very serious.

Having to stand up and advocate more for themselves in terms of the type of treatment that they want, or understanding more about their options, or if they have certain pain levels that aren't being addressed, speaking up for themselves without feeling like they're asking for the wrong type of medication or being seen as pain medication seeking.

So a lot of my job was to help translate a lot of what was happening to them from the specialist standpoint and then advocate for them on their behalf as well.

And actually being able to communicate with their other doctors as a team and saying, "This is what this patient really needs, "this is what she's requesting, "this is what she really needs, "and we need to take that seriously."

So it's a very complicated situation and I think we're doing better, particularly, from the patient side for people feeling empowered to advocate for themselves and ask for what they really need.

- And quickly, we have just about a minute left but I wanna hear from both of you on this.

What gives you hope regarding all of the research, and also the money that's gone into the research, and the progress toward finding a cure?

Dr. Akinyemiju.

- Sure.

There are lots of brilliant people working every day to try to decode this complex, serious issue of cancer, and to think about disparities, and think about the populations that are underserved and that are minorities that need extra support to ensure that they get the best quality treatment at the right time.

And I think we're making a lot of progress.

There's a lot of work that we still need to do but we're working on it.

- Dr. Swiner.

- Social media has its pros and cons and definitely sometimes more negatives than positives but the good news I think is seeing, particularly, the younger generations like this past couple of months, being Breast Cancer Awareness month, I've seen many TikToks, and reels, and Instagram posts about getting your mammograms, doing your own self exams and bringing breast cancer to the forefront.

So I think at least the younger generation is paying more attention to it, and it may have a lot to do with social media.

- Well, hopefully, and thank you so much for the work that you're doing.

Both of you, Dr. Nicole Swiner, Dr Tomi Akinyemiju, thank you both for your medical insight and ongoing research.

- Thank you so much.

[upbeat music] - Thank you.

- We also wanna thank you for watching and invite you to engage with us on Twitter or Instagram using the #BlackIssuesForum.

You can also find our full episodes on pbsnc.org/blackissuesforum, or listen at any time on Apple iTunes, Spotify, or Google Podcasts.

For Black Issues Forum I'm Deborah Holt Noel.

Thank you for watching.

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