S6E9: Breast Cancer PSA: Patients Need Emotional Support

Welcome to the Besties with Breasties podcast.

I'm Beth Wilmes, author, speaker, and founder of a human investment organization otherwise known as a nonprofit called Faith through Fire.

Our mission is to reduce the fear and anxiety breast cancer patients feel and replace it with hope and a path toward thriving.

I'm Jess, a mom of two, former college soccer player, elementary PE teacher and fitness enthusiast.

I was diagnosed with stage three breast.

Cancer just before my 40th birthday.

And I'm Jamie, researcher, retired professional boxer and breast cancer survivor who keeps life busy and joyful with a funny farm of animals, a loving family, and a big heart to serve others.

This podcast is about our experiences with.

Breast cancer and life after as young survivors and moms.

Hey, Jamie.

How you doing?

Hey, girl.

Good to be here with you.

Yeah.

So we have a guest today, but before we jump into to that conversation with Dr. Renata Sledge, which I love her.

Dr. Sledge.

I know, she's so funny.

So fun point to make is that you asked her how she likes to be addressed and she said Renata.

And she's a doctor, so we wanted to make sure we properly addressed her.

But she said she thought Dr. Sledge sounded like a super villain villain, which immediately made me like her.

No, she's not wrong.

I thought it was badass though.

But anyway, we're gonna introduce Renata here in just a moment, but I wanna ask you, Jamie, because this is all about are interwoven into cancer care and the role that they play.

How much did you allow your family, friends or physicians to influence your care when you went through?

Yeah, that's a big question.

As a lifelong people pleaser, they had more influence than, you know, I care to admit.

Hindsight's 20 20, but I would say my doctors had the most influence and I.

There was a point in my journey that I had to go back and re advocate for myself to make changes that I knew I didn't want originally, but they felt strongly about.

So I went with.

I mean, that's something that we're constantly telling women at Faith Through Fire is like, you have to do what feels right to you because if you let others influence your decision making, it leads to resentment or regret.

Yep.

And that can be really hard.

Yeah.

And that can be really hard for the patient.

But then also just, you know, you don't want to resent a loved one.

Right.

Because they put pressure on you to do something you know that's gonna have long term damaging effect.

You really have to think about what you want and then figure out a way to communicate that to your family.

So that's part of what we're going to talk about with Dr. Sledge.

So Renata Sledge is an assistant professor of social work at the University of Missouri, St. Louis and a licensed clinical social worker.

She has her PhD in Social Work and focuses her work on the human side of healthcare, helping professionals and families navigate difficult decisions with compassion and care.

Her research explores how relationships, identity, and support systems shape the way people experience, experience medical treatment and healing, which I think is so needed.

I mean, so needed.

So today we're going to talk to her about why care and healthcare needs to go beyond just treating the disease and focus on the whole person and their relationships.

How the healthcare system can sometimes unintentionally fail patients, especially women facing serious diagnosis like cancer.

Yep.

And how family fear and outside pressure influence medical decisions.

And how patients can stay connected to what matters most them when making hard choices.

But before we introduce Renata, let's hear from our first sponsor.

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You can participate by visiting faiththroughfire.org survivorship-boot camp well, welcome, Renata.

Thank you so much for being here today.

Thank you.

I appreciate the invitation.

Absolutely.

Could you share a little bit about your work in your area of focus as both a social worker and researcher?

What drew you to studying care and relationships in healthcare?

Yeah, so I am a medical social worker.

I started practicing as a social worker back in 2004.

I think.

I'm pretty sure it was 2004.

I've mostly worked in the medical world for about 10 years.

I worked in dialysis Then for several years after that, I was the program director at Cancer Support community of Greater St. Louis here in the St. Louis area.

After doing that frontline medical work for about 15 years, I was developing lots of questions about the kinds of things I was seeing, both in my own personal experience through the healthcare system, but also as a social worker watching people struggle to get care, struggle to respond to the treatment that they're given, and then people living with the effects of their care for many years afterwards.

I had so many questions about that, which drew me to go back to school to get my PhD in medical family therapy.

What was bothering you with what you were seeing?

What was kind of gnawing at you?

Yeah, that's a great question.

So I was really seeing people make these decisions or presented with opportunities for their health and surrounded by family, surrounded by friends, surrounded by healthcare providers who wanted to be there for them, but experiencing aloneness through it.

And when they were engaging with the healthcare team, engaging with other people, connected with their care, always this kind of sense of, am I doing the right thing?

Is the right thing happening?

Have I done everything I can?

I feel like I've missed something.

People aren't understanding this part of my experience.

It's not being addressed.

My relationships aren't as rich as I was hoping they would be at this stage in my life.

Like, all of those sorts of things were happening.

And I could see the healthcare providers around me trying to address those needs, and I could see the people with the diagnoses trying to address those needs.

But I felt like we were all trying to address them in a moment, and we were all like, what is the moment that we can do to fix this?

How can we make the best doctor's visit?

How can we make the best family interaction moment?

I think what you're tapping into, I mean, speaks to me so much in our mission at Faith Through Fire.

Because what we're always saying is that cancer is just as much an emotional battle as it is a physical battle.

And yet almost all the attention is on the physical disease.

And it sounds like that was kind of your experience, observing these interactions is that it's deeply personal, deeply emotional.

There's a lot of different players in this moment, and yet everybody's kind of operating in a silo, even though the ultimate goal is to support the person going through cancer.

Yeah, I guess the.

The.

You said that.

You summarized that beautifully.

And what was so frustrating for me was the lack of integration.

Everybody recognized the emotional experience.

Everybody recognized the spiritual experience.

Everybody recognized the relational Experience, but we weren't pulling it together in the moments that mattered for people and that just left to a, or contributed to continued fractured experience after a diagnosis.

Who does that fall on, though?

Because I would argue, like, I can imagine that if you ask all parties involved, right.

The provider's gonna say, I have so much time with this patient.

You know, the nurse navigator's overwhelmed because they're kind of the heartbeat of healthcare.

Right.

Because they marry the medical with the emotional, but yet they're stretched.

You know, the, the caregivers and family might have different intentions for the meeting than the patient.

Like, I mean, I can't even imagine how integration would start in that moment in the medical setting.

Yeah, well, so this is what's so exciting for me about it.

So when I started, like, really trying to figure out what was happening in the moment and who was responsible for that moment.

And to be honest, maybe this is the social worker in me that came out.

But I fully expected all my frustration to be on the provider.

Like, the provider needs to be the one to do this.

The patients need advocates at the provider level and maybe at the system level.

But I was very like self righteous and protective of all the people that I've served over all those years.

Right.

But what I learned, the more I read and the more I listened to people and the more I thought about this from not the provider perspective, but the researcher perspective, was that when we're talking about care and caring and integrating care, we have to recognize, and this sounds like a duh thing to the two of you, I'm sure that the experience doesn't happen in the doctor's office.

The experience doesn't happen in the treatment chair.

The experience doesn't happen in the hospital.

The experience happens before, during, and after all of those moments.

And so integration isn't about one moment.

Good care happens when all of those different parts are consistently giving and receiving and responding in such a way that everybody is caring with each other.

I agree with you that my first instinct was to say the providers need to be more aware of how their interactions affect a patient in the clinical setting.

Because a lot of people are retraumatized continually in the clinical setting, not to any direct intent by the healthcare provider.

You know, they might inadvertently kind of emotionally harm that patient by something they say or the way they interact or the way they respond to something.

So my initial thought was that they need to do better.

But I have also, like you, come to the realization that a lot of that prep work needs to be done in advance.

With the patient.

And I think they would benefit so much if we were educating both on the medical side.

And, you know, for instance, like with our nonprofit, we try to really educate patients on what medical trauma looks like and feels like so that they understand their emotions and then they can kind of be proactive with their interactions with their provider, you know, understanding what kind of provider is going to best meet their emotional needs.

And if it's not that provider asking for somebody else, you know, it's kind of like education plus advocacy leads to better interactions and more integration in the clinical setting.

But the medical system isn't set up to prep patients in that way.

And, you know, nonprofits like ours do our best, but we have limited reach and funding.

So what are your thoughts about how we get to that point?

Or do you even agree that that's the first step?

Yeah, I. I'm.

I'm.

Resistant is not quite the right word, but I would offer that there is not a first step.

That there are lots of steps that lots of different places need to take at the same moment.

Okay.

Because I do think that patients do need to be prepared.

Right.

And organizations like yours do a remarkable job of stepping in and creating, adding to the web of care that people don't know that they need.

Once a diagnosis happens, right.

Once somebody is diagnosed with something that changes their life, they need to grow their web of care to help prepare them for the next step.

Right.

And what your organization does so great and what other organizations in our area and nationally are trying really hard to do is to help people understand what their role is in their care.

The medical research word that they use for that is patient activation.

And healthcare teams are doing standardized patient activation measures to evaluate how good of a job are we as healthcare providers doing getting patients to engage in their health.

It's interesting.

I actually have more connections than I thought with you.

My mom's actually a transplant recipient, so we went through, you know, the dialysis journey and all of that.

And different than cancer, there was a longer Runway for her to prepare that web of care and what she needed versus, you know, Beth and I talk.

A lot about with.

With our community that it kind of feels like a cattle call when you get diagnosed with cancer.

And it's like, I wouldn't even say it's decisions, but it's like, here's your appointments, here's what we're doing.

And there isn't this space to say what does agency or that self determination look like in this process?

So it's.

It's interesting to think about for sure.

Can you, can you do that though, Jamie?

Like, can you really develop agency and self advocacy when you're traumatized and in fight or flight?

Because that's my question.

Well, that's what I'm saying.

That's what I'm saying.

I'm saying because there's such pressure to go, go, go, right?

And these hospitals are like continuum of care.

We don't want the patient to drop off.

We got to get them on the treatment plan.

They got to be here next Monday.

And we deal with so many women that are like, I don't even know how I feel about this.

And we're saying the same thing.

I was saying different to my mom's journey was a 20 year journey, knowing she was going to eventually need a transplant.

And so over time she could figure out and attune to what she needed.

But in the cancer world, I mean, diagnosed three weeks later, I'm having a double mastectomy like it's a vacuum.

And so we're saying the same thing, Beth.

Okay, so what are your thoughts, Renata, about that?

Like, how do we give patients the space to process and to really determine what they want and to advocate for themselves when there's such a rush?

Well, I think part of it is that the rush is real.

Right.

We need to respond and we need to act quickly.

And I think we need to shift the way we think about shared decision making conversations as providers and as patients.

In the academic world and in the clinical world, clinicians are trained to think of shared decision making as a moment.

So when the patient comes in, we're going to present them with this information.

And when they leave the office, they have to sign on to the mastectomy, they have to sign on to their treatment plan.

Plan.

And I think that's where we're missing it.

I think we can work.

I think patients have capacity.

I believe that patients have capacity even in the hardest moments to be able to process.

And I think healthcare providers have to disrupt their system in such a way to give people time to think.

Right.

So we want to do this surgery in three weeks.

We.

And this is the reason we think it needs to happen.

I acknowledge that this decision is bigger than what we can talk about in the next 15 minutes or 20 minutes.

I'd like to talk about it.

This is what I'm recommending.

And I know that for the next two weeks, you're going to talk through this with your family in this way.

You're going to talk through this with your friends.

You're going to struggle to sleep with this.

Here's some professionals I think you should and recognize and help prepare patients that this isn't one decision.

That every day after they meet with that clinic, in that clinic appointment, they're continuing to wrestle with the decision.

They're continuing to make the decision.

The decision happens up until the person shows up for the procedure, and even then they still have the opportunity to withdraw.

And I don't think providers recognize that that shared decision making moment isn't from the moment somebody hears you need a mastectomy.

It continues up until that procedure, and then it happens after.

And so I think when we talk about shared decision making and relational care and decision making, I think we have to disrupt the system to see that it's not something that happens in the clinic.

It continues to happen, and people need support after that as well.

It was interesting.

I was talking to a survivor today and I was just checking in with her because I suspected that she was struggling.

And so we were just chatting and I said, you know, how's it going with your doctors?

How are you feeling about your interactions?

And she's like, I like most of the team, except for I hate my oncologist.

And I'm like, well, that's a pretty big player in your story.

Why do you hate him?

And she said, because he's always telling me how I feel.

She says, he's always telling me I'm doing fine and I'm fine.

She's like, I keep telling him I'm not fine and he keeps telling me I'm fine.

And I thought that was so interesting because I'm sure that provider's trying to reassure her or tell her, hey, compared to other patients, you look like you're doing great.

And even in my own experience, I remember, you know, talking to a nurse navigator that I really liked and respected way down the line after I started Faith Through Fire.

And I was telling her how much I benefited from going to see a therapist while I was going, you know, in survivorship to just process everything and kind of get to the other side.

And she goes, really?

She's like, you are not the patient that I would have flagged as somebody that needed that kind of care.

And I'm like, well, let me just tell you every.

Everybody who gets diagnosed with cancer can benefit from that care.

But it's just interesting to see the assumptions being made.

We kind of call them silent strugglers at Faith Through Fire.

We have a lot of silent strugglers who outwardly look very resilient.

They're used to being independent.

They don't like people to know that they're struggling.

And I think that's the biggest opportunity for care to change for those silent strugglers.

But it's just interesting to see the mismatch between patient experience and the clinical side.

I guess I want to kind of transition into the family dynamics and how those play into care.

But before we do that, you guys want to do Boobs in the News?

Let's do it.

All right.

Boobs in the News is a fun segment where we read funny tweets by real people or ridiculous news stories.

Boobs in the news.

Bibs in the news.

Bibs in the news.

So the title of this is Woman sees Donald Trump in her Vegan Butterfly.

Where do you find this stuff?

I believe this happened in Missouri, so I think it caught, which of course it did.

Of course.

Of course it did.

That's.

I think that's why I pulled this one.

Okay, so this says Jan Castanello.

Castello Castellano.

It's Castellato was getting ready to have some breakfast when she almost lost her lunch.

She opened a tub of Earth Balance organic spread with plants to put the vegan butter on her toast, only to see what she claims is the image of Donald Trump looking right back at her.

It wasn't necessarily appetizing, but it was entertaining.

Quote, this was pretty much before I had coffee, so I was easily amused.

Castellano, 63, told the Huffington Post.

I needed to put on my glasses to make sure it was him.

I love it that she's like, let me get my bifocals to verify that this is, in fact, Donald Trump.

It says Castellano of Wildwood, Missouri.

Oh, my gosh.

Right down the road.

Right down the road from you.

Jamie says she was not thrilled to see the Donald, mainly because he is, quote, everywhere these days.

She thought about saving the Trump enhanced spread and sell it on ebay so I could donate the money to Hillary Clinton.

So this tells you when this was.

How funny is that?

But she says short term hunger won out over the long term wealth.

They must have had a short news cycle.

Go look at the picture.

I think it looks more like spongebob than it does Donald Trump.

What do you think?

Oh, my goodness.

Yeah, I think this is part of that Trump derangement syndrome where this lady hated him so much that she started seeing him in her butter.

I can't.

I don't.

I think it looks like spongebob.

It kind of looks like me after I've been exposed to shellfish.

If I'm being.

She didn't know she was looking at Jamie Griesheber post shellfish.

You're going to have to put that.

In the show notes.

So I should put that in the show notes.

Other people can see that.

Think it's funny?

Because somehow.

Okay, there was an article written about this, right?

So she.

She took a picture of it and then submitted it.

You know what I mean?

Because she.

She went ahead and spread her toast.

So it didn't, you know, she ruined.

She ruined the butter, but not before she took a picture of it.

And then they wrote a story about.

And then they wrote a story about it.

Like you said, it must have been a slow news cycle.

That's amazing.

That was a good one.

I don't know who the boob is here.

I'm not sure.

Yeah.

Is it the butter?

Is it this lady for reporting it?

Or is it.

Or is it Donald Trump for, like, paying the money to the butter company to get his name imprinted on butter?

Because, you know, Donald Trump puts his name on everything.

So maybe he made a plan for the butter, for the vegan butter group.

Oh, my God.

There's your.

There's your bibs.

Bibs.

And then is bibs and the news.

Bibs and the knees.

Okay, we're back.

So you obviously study relationships, and I'm really curious, Renata, how you feel about the family dynamics and how that plays out in a cancer journey.

Because I see it a lot of times where the patient and the family are saying two different things, and the needs of the patient are different than the needs of the family.

And often the patient is kind of muting their needs to meet family needs.

Is this something that you see often?

Yes, and I would offer that we see it a lot in the breast cancer world.

I'm a social worker, so I'm just gonna go there, Go there, do it.

You can edit this out if you need to, but we as women are socialized to mute our needs.

We do that before a breast cancer diagnosis.

We're muting our needs, we're self censoring things.

We're celebrating our quiet survivorship, the way we navigate the world with grace and all of these things.

And that doesn't change when a diagnosis enters in.

You kind of mentioned at the very start of this, you briefly touched on what was going on before.

Cancer continues during cancer, and I think that's incredibly important because it's hard enough to navigate cancer when you have great social support.

You're not financially taxed.

You have A great marriage, everything, you know, before cancer was going a okay, which was my case, I was like, okay, I'm living my best life.

And then, boom, that's hard enough.

Now you think about, okay, somebody's marriage was already on the rocks and now they're dealing with cancer, or somebody just lost their job, or somebody just lost their mother.

And that's the stuff we see at Faith Through Fire all the time.

99.9% Of the time prior to a diagnosis, a woman has undergone a significant stressor in their life leading up to that point, which I think is absolutely related.

But those problems don't go away when cancer comes.

In fact, it makes it harder.

So when you're trying to not only navigate those prior problems and now you have cancer, what is.

I mean, what are you to do in those circumstances?

Cause those are the patients that struggle the most.

So I think that there's lots of things that has to happen.

And this is one of the reasons why I like thinking about care as something that happens within a webinar.

Because when we think about care as something that only happens between the patient and the provider, then suddenly we just need more providers and we need more.

We need another referral, we need another professional to come in.

We need another thing.

When we think about care as something that happens all the time before a diagnosis happens.

We're receiving and giving care every day.

Whether we think we're receiving care or not, we are.

Care is part of life.

It just sometimes is visible and sometimes it's invisible.

So when somebody is diagnosed with cancer and there's precipitating events that happened before that need to continue to be addressed.

The web of care has to be intentionally grown.

And maybe that includes connections with other providers.

But that also means we need infrastructure of care from organizations like yours that see a need and respond to it and show up.

We need social media presence and voices that normalize how painful life is sometimes.

And that we need to give permission to not be okay, and then be okay the next day, and then not be okay, and then that it's not one or the other, that we move through these phases.

So we need those messages out there.

We need people who are in spiritual communities, in work communities, in.

In non oncology related communities, who are fluent in the language of cancer, who understand this idea of survivorship, who understand this idea of that need changes over time, and people who can tolerate shifting needs so that the person that you're describing, the 99.9% of people that come in to see you are Able to have a web of care around them that can see what's happening and respond to it.

I think the challenge is, at least what I've seen is their willingness to advocate for themselves, to go get it, because nobody's coming to save them.

And that's the part that I think is hard for women to hear that are in situations like that is that it's like, hey, listen, I get it.

Cancer sucks.

Everything that's going on sucks.

But it doesn't change the fact that you are the only one who's going to care about this as much as you do.

And if you don't go after it, if you don't get tapped into a local church, if you don't go see, you know, the financial aid person at your hospital, if you don't go and find a therapist that'll either take your insurance or do, you know, Medicaid.

I mean, at the end of the day, you are the only person who can do this for yourself.

And I think that a lot of people are so stuck that they don't self advocate and then they get lost to the system and then everybody's like, oh, shoot, that shouldn't have happened.

But at the end of the day, isn't it the person's own responsibility?

Well, so I would offer that at the end of the day, we have a collective responsibility for that and that all of those things that you described are not.

The person doesn't have only one decision to make that or one point to make that decision.

Right.

We have to keep showing up.

We have to keep reminding people.

We have to recognize that for whatever reason, the person couldn't do what they needed to do yesterday, but maybe they can do it today and maybe they can do it tomorrow.

And it's really hard as somebody who is cheering on people who's showing up for people who sees need to watch people not embrace their responsibility.

But that's because we're not seeing them embrace that responsibility about that thing because they're busy embracing responsibility about something.

We don't see people have a hard time with it in large part because they've been consistently let down their whole life.

And if you've been let down by whether it's formal or informal supports over and over and over again, you're not going to suddenly start trusting the supports that are coming at you.

Once you're diagnosed with cancer, you have a history of distrust and mistrust.

You're going to continue to have that with it and that's going to shape everything as well.

And there's going to be a resistance.

Why even follow up with this?

They're not going to be able to do anything for me.

Right.

I can't find certainty in my diagnosis, but I can find certainty in knowing that no one's going to be able to help me.

I mean, there's myriad reasons why people don't do the thing they need to do.

And our.

As giver, as carers, I think our obligation is to continue to ask what we can do for you to respond to that.

Once they react to what we do, whether it works or doesn't work, we adjust.

And we do it over and over and over and over and over again.

Sometimes it takes once, sometimes it takes thousands of attempts before we're caring with each other.

We're doing this together.

And this is where the system begins to let patients down.

Because the system, the larger health care system can't tolerate it.

It's not financially feasible for the health care system to do it.

There's not enough time for the health care system.

Right.

So the health care system lets it down.

And this is where nonprofit agencies, informal support, spiritual communities have to pick that up.

They have to be the ones to continue to show up, do it over and over and over again as many times as it takes.

Well, and I think you bring up an interesting point because sometimes there's a chasm between the, let's say the spiritual world and the hospitals or the nonprofit world and the hospitals.

Like, they don't.

They don't.

Nobody's looking at each other as partners.

Right.

It's kind of like everybody's operating in their own silos.

And that's probably where the biggest opportunity to create that web exists.

I want to get your final thoughts for anybody listening to us.

But before we do that, let's hear from our second sponsor.

Thrivent is a proud sponsor of Faith through fire.

Thrivent believes money is a tool, not a goal.

The Gateway Financial group with Thrivent is local to the St. Louis area and can work with you to create a financial strategy that reflects your priorities and helps you protect the things that matter to you, like family and giving back.

Please call 314-783-4214 to schedule a free consultation with one of Thriven's Gateway Financial advisors.

All right, Renata, we're wrapping up here.

Any final thoughts you want anybody hearing this to.

To know?

I think the big message that I want people to hear is that care and caring responsibilities is not something that only one person can do.

Right.

We are in relation with each other.

We are in relation with institutions.

We are in relation with other organizations, and we are connected to people in ways we don't even realize.

And so because of that, we have a responsibility to continue to try to find ways to show up.

And we have to acknowledge that sometimes we show up in one way and sometimes we show up in another way.

And we have to have compassion for ourselves and others and respecting that, that there's different parts of people that are showing up.

And that just means that different part needs something in that moment.

And so the more we can take care of ourselves so we can respond with compassion and continue to show up for the people that need us, we're going to do better for ourselves and for others.

Well said.

Thank you so much for being with us today.

That was so fun.

I appreciate you so much.

Yeah, thank you.

I really appreciate this invitation.

I hope it was helpful.

Absolutely.

Until next time, guys.

See ya.

Thank you for being a listener of the Besties with Breasties podcast.

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