Living well with metastatic breast cancer, with Stephanie Broadnax Broussard, LCSW, ACHP-SW and Don S. Dizon, MD, FACP, FASCO

Living Beyond Breast Cancer’s 17th annual Conference on Metastatic Breast Cancer was held April 28-30, 2023 as a hybrid conference in Philadelphia, PA in-person and virtually via our online conference platform. Stephanie Broadnax Broussard, LCSW, ACHP-SW and Don S. Dizon, MD, FACP, FASCO gave the closing keynote on the topic of living well with metastatic breast cancer.

Watch the video or read the transcript below to get the information and tools you need to manage the physical and emotional impact of metastatic breast cancer and its treatments. Explore the quality-of-life issues that impact living well, the gift of self-care, and how to define well-being for yourself to live as fully as possible.

Transcript

Janine E. Guglielmino, MA (00:00):
Why don’t we start with a general question, and I’ll start with you, Dr. Dizon. You talk a lot about survivorship in metastatic breast cancer, and historically that’s not a term that’s been used for people with stage IV breast cancer. Can you talk a little bit about what survivorship means from your perspective for people with metastatic disease?

Don S. Dizon, MD, FACP, FASCO (00:18):
Sure. I just want to make sure everyone can see the shoes. Can everyone see the shoes? <laugh> Do you like them? They’re good, right? At the end I’ll click three times and get home.
I think it’s an unfortunate thing if you go back a decade now, what happened was the Institute of Medicine did a survey of practices across the United States and found that people after they were diagnosed with cancer were not getting flu shots after their diagnosis. And they weren’t getting screened for, say, colon cancer if you were treated for breast cancer. They were falling through this hole where their primary care needs were not getting met. And it put people treated for cancer, for whatever type, at such a disadvantage for living well.

So that prompted this report from the Institute of Medicine about the importance of meeting the needs for people after they were treated for cancer. It started the whole initiative to do survivorship care plans and treatment summaries. But the upshot of that is people like Stephanie and I were told that this needs to be done after curative intent therapy and nationally survivorship clinics were set up to meet the needs of everyone who was cured.

And so that automatically created this schism among all of the cancer communities because either you were cured — in which case you got the healthy lifestyles conversations, the exercise conversations, sexuality conversations, and the fertility conversations — and if you were not cured or living with metastatic disease, you were getting the psychosocial support, the end of life talks, the caregiver at a difficult time talks. But there were people in both of our clinics who had been treated for metastatic breast cancer and were seeing me because they were still interested in being sexual. And there were people who have shared their stories of having an incurable, fatal brain cancer wanting to become fathers. So Patty Ganz, I remember sitting in a room with probably the single most important voices for survivorship, and Patty had said something I thought was very, very important for this group: that after cancer, everything is palliative.

Every issue is a palliative issue. Because palliative by its definition just means support.

So I’ve been trying to empower patient advocacy groups and groups of people to see themselves as survivors. And I know it’s not a word, especially if you were diagnosed in the last decade, you feel like applies to you. Because no one’s probably ever offered you a care plan, if you have metastatic disease. You go from clinic to clinic, treatment to treatment, and then at some point you get referred to palliative care. But it’s true that you are surviving this cancer. Survivorship is not a state, I don’t think. I think it’s a process and we’re all surviving something.

I think some of the feedback I’ve gotten from people in this room is that metastatic breast cancer will ultimately kill you. It is an, ultimately it’s a fatal disease. And hence that goes beyond any conversations about survivorship because you know, at some point it’s going to kill you. Well, I think we all are going to die at some point, right? But there’s another term that people do like and subscribe to, even if they're not metastatic. And it’s thriving, right? Thrivership. And I think it’s fine, but practically speaking, the way we are going to address your issues going forward after treatments and find evidence-based ways to help is if we get federal funding. And right now it’s federal funding for survivorship research. So practically speaking, that’s why it’s important. No one in this room is going to tell you, you are a survivor. I think it’s very much, you’re going to find the term that describes each and every one of you. And I think that's what it is.

Janine E. Guglielmino, MA (05:14):
Stephanie, from your perspective, how do you see this? I saw you clapping when Dr. Dizon talked about palliative care being offered to everyone.

Stephanie Broadnax Broussard, LCSW, ACHP-SW (05:22):
I'm like giddy in my seat, cause I’m just like, “Oh!” I think first of all, it’s just an honor to be in this space, in this room. There’s an energy that emits from this space that is absolutely beautiful.

But I think the reality is, is that the work that we do often, especially because I’m palliative care specialty, that’s the space that I live in, oftentimes we are challenging the notions of traditional, the medical community, in regards to traditional access for palliative care. So as he mentioned, oftentimes patients are referred to palliative care at end of life. I believe we should palliate them all.

The moment you have a diagnosis that is a serious illness, I believe you should have access to palliative care. Because I believe that palliative care is the principle and a philosophy and a scope of services that says that I care about treating all of you. I want to see all of you. I believe that all of you should be well. So your mind, your mental status, your emotional well-being, your physical well-being, your sexual well-being, all of you should be well and we should be working collectively to figure out how to do that.

And the only way we do that is by you setting what the definition of living well is for you. There isn’t a definition I can be like, “This is living well and this is it.” Cause it is an individualized perspective. What living well is for me may not be living well for you.

And if I ask everybody in this room, there may be some pieces that are similar, but there’ll be differences because we are individuals. And so when we think about what is it for us to serve in this space and really see people, it really requires us to change some of the narratives in the healthcare community about access to survivorship, about access to palliative care. While we were asking for federal aid for survivorship research, we also be asking for aid for palliative care because not all patients have access to it. Right? There are some limitations.
So we want to make sure that we are having those conversations that even if my provider doesn’t say these things to me, how do I bring these things to the awareness that this is part of how I want to be cared for too?

Janine E. Guglielmino, MA (07:31):
So for those in the room who are very newly diagnosed, we know we have some people, we have a few people who have been diagnosed less than a year ago, and we have some people who have been diagnosed less than a month ago. How do these issues, how does survivorship issues, why should they be important to those people?

Stephanie Broadnax Broussard, LCSW, ACHP-SW (07:51):
I think because the goal is, and you said it so perfectly, is that survivorship even for people who may never ring the bell — I serve sometimes we have what we call a “meaning-centered support group” for patients who never get the opportunity to ring the bell. Because what we found when we had support groups even though the diagnoses were similar, there was something that the space needed that we couldn’t bring into other groups. Which is why I think this conference is perfect because it sets that tone that this is a space that’s just for this experience.

But one of the things that was really important is that when we think about the experiences of people, especially with metastatic breast cancer, it is that all of your life experience, right? It is not just existing. And so in order to move from existing to thriving and surviving, it means that we have to talk about what is it in all of your life to live well.

So your healthy lifestyle, right? How do you make some adjustments in your healthy lifestyle in order to be able to do that so that you are living well? How do you make some adjustments? And I love the panel talked about some of emotional shifts that are required in your mindset in order to navigate the space. You have to change how you think, you have to change how you see your circumstances. You have to call some things up and do some work, even.

As a therapist, that’s what I serve, the space I sit in is. We’re having those tough conversations so that we can process and think through some things and often find meaning, and for some people we don’t. But it’s really working through and having to shift our perspectives to make sure that we actually are taking the opportunity to live well in each aspect of our life.

So whether it’s our family relationships. All of them are like, it’s like cancer is a bomb. It impacts all those nuances of our life. And if we don't call them out and speak to them, then they get left in the rubble.

I think living well in regards to especially people who are newly diagnosed, I think the first thing is information. Conversations like this is really important because it allows us to say, “Hey, here’s things that you can expect.” Right? I heard somebody say today that they wish somebody would’ve said something about what would happen. And I’m assuming — I’m just going to be really blunt — you were talking about some of the vaginal experiences with intimacy and what the challenges are, even when you’re trying to connect and your body won’t respond to a person that you lovingly want to connect with. And what that can do for a relationship when you want that and all those changes.

I know that’s your area, so I know you can listen, but I think there’s an opportunity for us to really call some of these conversations up and speak to them directly and early so that people aren’t shocked and aren’t always behind the ball with experiences. And I think that’s how we can really serve people who are newly diagnosed too.

Don S. Dizon, MD, FACP, FASCO (10:28):
Yeah, and I agree with everything that Stephanie said. I think for people who are newly diagnosed with metastatic disease it’s important to understand that the treatments aren’t aimed just at your tumor. I think it is a social disease, but it’s also life changing in terms of, we all see a path that we go through. And as you get older, trust me when I say this, as you get older doors close and I’m happy about that. But they close because of chronological circumstances. When you go from being told we’re going to cure you of this cancer, or when you’re never told this is a curable cancer, your circumstances change immediately. So we want to give voice to that, because that is also a very isolating thing to sit in a room with your friends of your same age and they’re talking about grandchildren, next vacation, golden Jubilees, anniversaries, and you’re sitting there and saying, “I don't know what this black hole’s going to take me through.” That can be very isolating. And there are two words that we banter about a lot, and you may have heard them as well, but your goals and your preferences are not conversations we should have as you’re approaching end of life.

Stephanie Broadnax Broussard, LCSW, ACHP-SW (11:55):
Absolutely.

Don S. Dizon, MD, FACP, FASCO (11:57):
Your goals need to be voiced so that we can help you manage. Your preferences, someone mentioned Taxol [paclitaxel] was the only choice they were given. You should always have a choice because it’s your life.

The way we as physicians come up with those choices is by understanding what your preferences are.

“I prefer not to come weekly.”

“I prefer an oral therapy.”

“I prefer a clinical trial.”

“I don’t prefer a clinical trial at all.”

These are the ways that we can help construct a personalized care plan. We in oncology talk a lot about precision oncology, having the biology of your cancer help us figure out how to treat your cancer. But that precision also embodies personalization. And you have a say in what that looks like. But unless we have those conversations, people can have care rendered to them rather than helping drive that care.

Stephanie Broadnax Broussard, LCSW, ACHP-SW (13:17):
Can I say something to that? I think, and to call on your point, I think one of the things I would really encourage a newly diagnosed person is not to be shocked when their physician or provider walks up to them and says, “I want to talk to you about your goals and wishes regarding your health care.”

Oftentimes what I see, there’s a resistance because they think that we’re not in it with them, that we’re giving up because we want to talk about this, but really this is how we see you. This is how we’re making sure that we’re actually providing personalized care. And oftentimes I’ve had patients say, “I don't want to do that. That’s taking my hope away.” And we’re like, wait, let’s lean into it.

And so I’m able to kind of craft my conversation and meet them where they are. But we want you to be open and aware that this is how you are participatory in your care experience. We wouldn’t treat a patient without doing labs first, right? We wouldn’t treat a patient without knowing what’s happening to their body. And so we also shouldn’t treat you without knowing what your goals and preferences are. And so please be open to those conversations when they come because hopefully your provider has some communication skills that are going to be helpful. And if they don’t, we’ll deal with that later. But hopefully they are able to do that. And so just be open to the conversations.

Janine E. Guglielmino, MA (14:25):
Thanks for that. And I think that brings up a good question that someone had asked in the chat, which is, when should this conversation happen? So this person mentioned that the American Society of Clinical Oncology has a guideline that everyone should have a conversation about palliative care upon diagnosis, early on, but really even the healthcare professionals sometimes conflate hospice care and palliative care. And they are different things. From your perspective, when should these conversations be happening?

Stephanie Broadnax Broussard, LCSW, ACHP-SW (14:57):
I think they’re two different things, right? I think there is a goals of care conversation and then there’s a palliative care introduction. I first believe that a goals of care conversation should happen early and often. They should happen early. I mean immediately, and often. I think sometimes there’s so much information that you’re taking in that it can be difficult to have a conversation that covers the breadth of your goals. But I think it should happen very early.

But I think palliative care should be introduced early as well. I think if we introduce philosophies when we’re not in crisis, we are more likely to receive the information and really know what to do with it. Unfortunately, there are medical professionals who still misunderstand what palliative care is and they think it’s hospice. And so we are dealing with that as a palliative care specialty actively. We’re acting to educate and educate even our own medical professionals. So it doesn’t surprise me that there are people who misunderstand that too.

Don S. Dizon, MD, FACP, FASCO (15:52):
Yeah, I mean, I do think there’s a time and a place for a lot of what we can do with you. Because it’s not like you’re going to just see me once and then you see my advanced practice provider for the rest of the time you’re under treatment.

When someone is told they have metastatic disease, I understand that they may not hear everything the first time, that there’s that shock element to it. So I oftentimes will say, “What did you hear me say?” And then if they’re able to say maybe half of what I said, it’s like, let’s come back to this when I see you next time. So I don’t do diagnosis, prognosis, treatment, supportive care, goals, preferences, referral to palliative care all in one visit. And I don't think you should expect that’s going to happen for any of you.

What do I do in my own clinic? We have that conversation. I try to see what you need me to know. I introduce you to the team that you at some point will be meeting. So that’s my nurse navigator, my advanced practice provider, my supportive care clinician. And what we’ve learned at Brown, and this is something that’s happened at other institutions, is that if I phrase something as “supportive care,” not only is it less threatening to the person who has metastatic disease, but it’s also less devastating to their caregiver. Because I’m also sensitive on that as well.

So I say meet everybody, you will speak with me at your next visit, and we’ll create a path forward. Everything has its own place and time and there is no one time when it's most quote appropriate, but if the issue arises, I should be ready to meet you where you need me to be.

Let me put it that way.

Janine E. Guglielmino, MA (17:58):
Stephanie. What are your thoughts on moving — well you may have something to say about that in relation to this question — but there’s definitely a movement among advocates to change the name of palliative care to supportive care, and I know we kind of use them interchangeably at Living Beyond Breast Cancer, because there’s just so much stigma around the use of the word, and I’m curious how you feel about that.

Stephanie Broadnax Broussard, LCSW, ACHP-SW (18:25):
I probably won’t get claps, but I’m a palliative care purist. And what I mean by that is that I believe in the value that palliative care brings to patients. And so because of that, I believe what we do is meet the knowledge gap head on and we provide education. I think we provide education about what it is, what it does, why it’s impactful, why it’s meaningful, so that people are aware and really can understand that versus shifting the title of what it is.

There’s a misconception. I think supportive care can be so much that I think if we’re not careful, we morph into something that is not palliative care. And so, because I believe in the access to comprehensive palliative care, I really do believe that we should stick to the title of palliative care. However, by any means necessary, I think what’s most important is that people get access. And so if a family is more comfortable with that, then I think that’s what’s important. But I will say I am wholeheartedly a palliative care purist.

Janine E. Guglielmino, MA (19:22):
Fair enough, fair enough. So we’ve started to touch on a number of things. I’d like to zoom in on a couple of things that I know have come up on different panels.

Why don't we start with sexuality and intimacy, since Dr. Dizon, I know this is a passion of yours and a research interest. Can you talk a little bit about what intimacy means in the context of metastatic breast cancer and the kind of things that your patients bring to you?

Don S. Dizon, MD, FACP, FASCO (19:50):
Yeah. I think intimacy is a very loaded term. I would probably say as the term gets mentioned in this room, all of you have very different meanings of that term. Because there’s emotional intimacy and there’s physical intimacy, and intimacy is defined very differently by whether or not you’re a woman or a man. So oftentimes when I hear, “We have no intimacy,” and a couple brings that up, the first question I have is, “What do you mean by that?” Because that’s really the most important part.

I have tried to do a sexualized study in people with metastatic disease through the palliative care committee at one of our national groups. And the thing that always holds it back is the objectives and definitions part of that, because there’s part of my academic group who feels sexuality in this context of metastatic disease is about emotional intimacy. It’s about connectedness, it’s about hearing each other and having that space to be together. But there’s a whole other group, that includes some patients, who say it’s about orgasm for me. It’s about physical intimacy. It’s about how do I reclaim this for my marriage, for my relationship.

And it’s complicated because there’s also that voice of the partner, who may have morphed from a romantic role to a caregiver role. He’s or she is the one taking you to your clinic appointments. He or she is the one giving you your medications at home. He or she is the one to take you to the emergency room and sit by your bedside when you’re hospitalized. And trying to go from that role of caregiver back to a role of physically intimate partner can be really hard.

So I think in the context of metastatic disease is very easy to simplify as to what intimacy looks like. What I’m learning in practice is that it’s a very, very indistinctly defined term and each person’s own sense of that intimacy is really what’s most important.

Two things, two examples of this is a woman who received treatment for brain metastases from her breast cancer and went to her breast oncologist, a friend of mine, and asked to be referred for sexual health counseling. And I got a call from that oncologist saying, “Who can I refer her to?”

I have a sexual health clinic.

And when I said, “Well, you know, I could see her.” He was like, “Oh, I didn’t know you saw people with metastatic disease.” So what ends up happening is that people with metastatic disease are seeking out services because no one is offering it to them.

The other way that I’ve seen this is someone who is horrifically sick from treatment and came in with her spouse and the frustration in both of their voices over the loss of a physical relationship was immediate. And it was more on her part that she needed physical intimacy, needed it in her life. And he sat there shaking his head and was like, “You are so sick, you have so many bone mets, I don't even know how to touch you and you want to have sex.” Getting them in the room so that we can meet at least on a place to start on what intimacy is, is as important and more important than my telling you what intimacy is.

Stephanie Broadnax Broussard, LCSW, ACHP-SW (24:01):
And I think on my team, I actually just brought in a sex therapist to our team that’s oncology specific. Because we see that need just growing and growing and really outside of our depth with the ability to help process intimacy. And we could do that, you know, process what it means to people, but when it goes to the point of establishing and reestablishing that physical intimacy where there’s the communication and trust to have the conversation openly and honestly, we needed — and listen, I’m in the south, I’m in Texas — so we needed someone skilled to be able to have the conversation and steward it well.

So one of the things we’ve actually been working on is helping to establish a sexuality and intimacy care plan as part of your advanced care planning. We have directives, we have your medical power of attorney, your directive to physicians, those kind of things. But what it is, is a plan between the two individuals to say, as the patient can say, here’s what I would be open to and want to happen. Regardless of where I am, here’s what I want to see. And then the partners being able to have that conversation and discuss, and they can have that as an agreement between them so the partner has this reminder when things change maybe physically or “I’m not able to always convey those things. These are what I want.” We’ve seen it a lot in the dementia community where they’ve had to put these things in place where we have partners who want to maintain the intimacy but are concerned because of the cognitive changes. And so we’re trying to adapt that to be appropriate in the oncological space as well.

Janine E. Guglielmino, MA (25:28):
Thanks Stephanie. I want to turn to Cathy for a question.

Catherine Ormerod MSS, MLSP (25:32):
Yeah. We also have some people who are single but want to date and have new relationships.

Don S. Dizon, MD, FACP, FASCO (25:41):
Yeah. So they did not ask me to speak about sexuality of this meeting, but if you want it next year, happy do it.

I do have a slide in the presentation I give and it speaks to the biases of your medical team. We make decisions all the time on who should have sexual health counseling. And single people are often not offered that. Neither are gay people. Neither are older people. “You’re too old, you’re not having sex, you’re just too old, so I'm not even going to bother,” or “I don’t want to make you feel bad because you don’t have a partner.” The assumption is after metastatic disease, you’re never going to get a partner. Those are challenges that I go around the country and internationally trying to say, you cannot make those assumptions about people. Just like you can’t assume someone’s going to tolerate Taxol just by looking at them.

I do see people who are single in this practice and so much of it is giving voice to this notion that “I want something more in my life,” and they deserve something more in their life. And even though you don’t have a partner now, metastatic disease isn’t supposed to be the thing that stops you from finding it. But there are things we talk about. We talk about, “How do I disclose this? How do I meet people?” You know, so many of the folks I’ve seen have these social media profiles where they’ve talked about their metastatic disease for the purposes of finding community. And we are in a situation in our country and globally that if you find somebody on Tinder, you’re both going to look each other up on Google.

So oftentimes that disclosure is not even something that we control. I’ve had people own that. They say, “I assume they knew I am metastatic because I talk about it so frequently on my social media page, so I’m going to assume they know.”

Don’t assume anything, especially when you’re meeting people.

We talk about strategies and we talk about what does the conversation look like. And we talk about physical health. Do you want to prepare for the eventuality that you’re going to have a physically intimate moment? Do you want to try to work on vaginal health? Again, it’s about shared goals, but it’s the same things I talk about with people in relationships.

And I should say one other thing. There are sexual health specialists, there’s sex therapists, and then there are cancer center-embedded and sensitized sex therapists. There is a difference. And the biggest one is that in a general sex therapy practice, if I hear someone say, “I need to have sex or he’ll leave me,” or “I am having sex even though it hurts because he needs it.” That would be a red flag in a general community practice. You deserve better, you should not be harmed. This sounds emotionally abusive.

Those are not things I talk about in a cancer center sexual health program. There are a hundred different reasons why people have sex. My job in the cancer center is to go where you need me to go. And hopefully bring you pleasure while you’re doing it. But going where you want us to go is more important than anything else.

Stephanie Broadnax Broussard, LCSW, ACHP-SW (29:32):
And I’ll tell you, even every therapist isn’t equipped. The reason we brought in somebody that was an oncology specific sex therapist is because the reality is that even as a clinician, I didn’t want my clinicians doing harm to my patients because they were using their limited awareness to be able to meet patients where they were. If my patients needed to be able to talk about intercourse and all these kind of things, I don’t need you clutching your pearls. I need you to be able to serve.

Then I think the other thing about when you’re single — yesterday Kelly did a beautiful job of talking about grief — I think there’s also the emotional component of should I date? Processing the fear and the anxiety that comes with even trying to put yourself out there.

And so I would always encourage getting community, but also get with somebody that can help you process that, so that you’re able to realize that you are deserving of whatever it is you want to experience, because you’re here. And I think oftentimes I see patients who come to me and they’re kind of just existing. They think that they shouldn’t have companionship. They think that they’re not entitled to an orgasm. They think that they’re not entitled to all these different life experiences because of their disease. And I think that’s just not appropriate. We have to challenge that notion. You should live because you’re living.

Don S. Dizon, MD, FACP, FASCO (30:45):
But there’s one, someone came to see me, metastatic disease in her seventies and she was referred by her gynecologist at a sexual health clinic. And I was like, “How can I help you?” She was like, “My doctor said I should be having better sex.”

Stephanie Broadnax Broussard, LCSW, ACHP-SW (31:03):
<laugh>. I love it.

Don S. Dizon, MD, FACP, FASCO (31:05):
I was like, “OK, what is it like right now?”

She’s like, “It’s really good.”

I was like, “So what does better look like for you?”

She’s like, “I thought you could tell me.”

Don S. Dizon, MD, FACP, FASCO (31:18):
I think again, people want what’s best for the people they’re taking care of. But you have to help us define what we will be working for. With this one person. I said, “You know what, if you are happy, I’m happy, call me if you need me.”

Stephanie Broadnax Broussard, LCSW, ACHP-SW (31:40):
Yeah. That’s good.

Janine E. Guglielmino, MA (31:42):
Dr. Dizon, what about the situation where someone really wants to talk about sex but their doctor either won’t talk about it or doesn’t even know where to send them for help. What what can people do?

Don S. Dizon, MD, FACP, FASCO (31:55):
Yeah, I mean I think that’s still unfortunately the case in the vast majority of this country. And certainly, I gave this talk in the Philippines, that’s not even a conversation on anyone’s radar. I think we are in a place where there are web-based resources and certainly patient communities. For example, there’s one in the breast cancer community where I’m still learning that things are out there that patients are saying, “This really works. You should start prescribing this.” You know, they’re learning from each other.

LBBC has a nice site on sexual health. There’s a lot of advocacy groups that have it. The American Society of Clinical Oncology’s cancer.net has information on this. And then, a bunch of us who do talks on this, you’ll find them online. And that’s a way for you just to understand that these are not issues that you alone are dealing with. In fact, one of the biggest things we do is give voice to it, to let people know they’re not alone and that this is exceptionally common.

And then beyond that, if you are, and this is people within Providence at Brown who are like, “I have no desire. I can’t talk about this. Don’t talk to me about this.” That’s not appropriate. And if you’re having that experience with your physician, go to your navigator, go to your social worker, ask a therapist about this, get the care you require and deserve. It may not be with your doctor.

Janine E. Guglielmino, MA (33:45):
Thank you for addressing that.

Janine E. Guglielmino, MA (33:48):
Stephanie, at the beginning of our conversation, you were talking a little bit about healthy lifestyles, and I wanted to get some information about what are some of the issues that you discussed with your clients about healthy lifestyles who have metastatic breast cancer.

Stephanie Broadnax Broussard, LCSW, ACHP-SW (34:06):
It’s usually twofold. I think there is the idea of quality of life and oftentimes what we think is healthy lifestyles, as we define it, can sometimes have objecting viewpoints or they’re resistant or they’re incongruent.

For example, if food gives someone a lot of joy that doesn’t necessarily line up with a green smoothie or the green shakes they were talking about the other day. So how do we find balance with creating what is healthy for you with regards to what your provider says and what the best instructions are or recommendations are based on the evidence in the science but also what is meaningful to you.

I think especially people of color meet around food, right? Food especially in the South and different areas, food is meaningful in connecting at that space. How do you help set a narrative that is healthy, but also gives you the opportunity to connect in those same ways? And I think that goes to whether it’s exercise or even mental wellness.

I heard somebody say today about mindfulness — I was like, “Yes!” — but implementing practices in your toolbox that really helped to sustain you and to create a healthy lifestyle where you’re not having to just do things in crisis, where it’s part of your daily practice. So whether that is practicing mindfulness or journaling or even affirmations or meditation whether that is just some type of movement. You know, there are a lot of different activities. We had the beautiful dance class yesterday. Making sure that you’re moving your body within your limitations.

But then also that spiritual wellness, I think people think that that is a religious component and it’s not really. It’s about how do you connect with yourself and then whatever power you believe in. And for some people that is the internal, some people that’s god, it’s a lot of different variations, but spirituality is also about wellness too. And so it’s seeing the whole person and saying, “How do we make sure that we activate every component to really to live well and have a healthy lifestyle?”

It also may require adjustments. And so what worked for me in one season may not be what works for me in a different. Making sure that, if your provider doesn’t offer you access to a dietitian or a therapist or you know, a psychologist, whatever you need, that you’re making sure that you say that those things are important to me and how do I access them.

And using communities like this, when you don’t have access to those things within your practice by leveraging that and saying, “Hey, how do I plug in to fill the gaps?”

As social workers and navigators, what we do is we have the pieces of your puzzle and we’re trying to put them in the right place. But if you don’t have access to that, you have to look at your circumstances and get plugged in, get access to information and say, “How do I now get the pieces for myself if no one will give them to me?” Self-advocacy looks like saying “I need this, I want to be able to take life as it comes.” See it. I’m not a toxic positivity kind of girl, but see it for what it is and do all that I can with what I have. And that means really getting access to that information and plugging in.

Janine E. Guglielmino, MA (36:56):
I really appreciate you talking about the barriers because we know everyone here, people have very different access to this type of care.

Dr. Dizon, from your perspective, what are some of the things that you also talk about and also how would you encourage people who may have some barriers where they live?

Don S. Dizon, MD, FACP, FASCO (37:13):
Well, be aware of good intentions. That’s what I'd say. I think a common experience, and this happened with friends of mine who have metastatic disease, people are always ready with advice, right? About what to avoid, what to really eat, starvation, avoiding sugar, don’t drink anything or you’ll die with that one cocktail.

So what do I say? I say the number one cause of death in the United States is cardiovascular disease, so a heart-healthy diet will be a good diet to follow regardless.

Be aware that misinformation is all over the place, and things that are purported to be good for metastatic breast cancer or metastatic disease in general doesn’t have a foundation in evidence. A lot of what I say is about being culturally informed. For example, if someone is from East Africa, my telling them to follow a plant-based diet, they probably grew up with a plant-based diet. You know, I’m assuming that they they ate a lot of red meat, based on what? Understanding the cultural perspectives of this is important.

Giving broad advice and then also I find very helpful saying what you can actually still do and not worry that it’s going to kill you. You can have a piece of cake, you really can.

You know, and it’s all right if you want to have a cocktail, yes, you can have a cocktail. Don’t drink a whole two liters of wine. Maybe, all right? But yeah, if you want to have a drink, go ahead and do that. We have to live, it’s about quality of life as much as we want to live.

The ultimate thing is that everything that we do as human beings is so multifactorial. The things we eat, how much we expend in terms of energy, exercise or whatnot, all of those things play off of each other. And at the end of the day, as long as you’re doing things to keep yourself healthy, and for my bottomline opinion, heart healthy diet is a great one to follow. I think you’re going to be okay. At the end of the day, we want you strong enough to be able to withstand therapies that you’re on. And I’ve had people do a starvation diet and pass out in the infusion unit. And I can't see that as being helpful.

Janine E. Guglielmino, MA (40:12):
Thank you. Cathy, would you like to ask a question?

Catherine Ormerod MSS, MLSP (40:15):
Yes, we want to get back to sex.

Stephanie Broadnax Broussard, LCSW, ACHP-SW
Sex is a hot topic!

Don S. Dizon, MD, FACP, FASCO (40:20):
Yes, we should.

Catherine Ormerod MSS, MLSP (40:25):
What can help with libido and drive? And if there are products involved, are there any less expensive products than some that are offered?

Don S. Dizon, MD, FACP, FASCO (40:36):
Yeah. So the number one reason people see me is because they have no desire. That is the number one reason. But unpacking that is really, really important. Having people have a primary issue with desire as a single problem is really rare. What I mean by that is people who can go through the physical mechanisms of intercourse, orgasm, enjoy it during the moment they do it, and then once it’s done, you ask them, “Do you want to go again?” And they’re like, meh.

“Now what about next week?”

“Meh, no.”

That’s a primary issue of desire. Most commonly it’s secondary and secondary to pain. When I try to unpack that, it turns out it’s not fun. It hurts, or it’s just not the same. Think to yourself, why would you want to do something that doesn't bring you pleasure? We, none of us want to do that, right?

That lack of desire and the way forward is trying to figure out what’s the cause, the root cause, of that lack of desire. If it’s menopausal symptoms, there are over-the-counter moisturizers that can help and help as well as estrogen. Those moisturizers you can use five times a week — not just once every three weeks or once every week — five times a week and use a one hour before intercourse. There’s data with um, K-Y Jelly that that works as well as estrogen. But if it’s pain, you need to have a pelvic exam.

And if there’s pain at the immediate side of entry into the vagina, if you are laying there and everything’s going great and moisture is not an issue, wetness is not an issue, but the moment penetration starts, you’re having needles and knives through your vaginal vault. I can actually fix that very quickly. Yeah. Lidocaine, water-based, I’m not kidding. Water-based lidocaine, compared to placebo, people were able to have penetrative intercourse. Ninety-five percent of people who were avoiding intercourse with a little bit of lidocaine just at the vaginal entry, not inside the vagina, was able to reintroduce penetrative intercourse. And for people with penises in the room, there was no anesthesia. So you had no impact on that.

Now, don’t go home and ask for this without a pelvic exam.

But there’s sometimes where people have spasm in the vaginal vault, it’s a trained reaction. Your vagina is trying to protect you from pain. And even as much as you or your husband or boyfriend or lover says, “Just relax, relax into it.” Or you tell yourself, “I just need to breathe through it. Just breathe through it and it’ll be okay.” Your vagina isn’t going to listen to you. She’s just not, she’s not going to listen to you. She’s going to spasm. You can tell her all you want. She’s not going to listen because it’s a learned response. She’s saying, “Get it out because it hurts.” That is not going to be helped by lidocaine. That’s where pelvic PT comes in. That’s where vaginal dilators may play a role.

So there’s a ton of things that we can do to unpack desire. And the one thing you can do while you’re trying to get healthy in the pelvis and work on these issues, we can again work on physical intimacy. And there’s this thing called sensate focus. That is something that is for the couple, and it’s really to decouple, or separate, touch from penetrative activities. So to enjoy touch as its own objective, again, to relearn how to touch each other after cancer is something where you both can have a stake in recovery.

And what I do is I give people this paperwork and then give them a chance to read it and I come back in the room. It’s like, “What do you think? Is this is something you want to try? Great! How often do you want to try? Two times a week? Once a week? Five times a week?”

We make a contract. We’re going to try two times a week. I will see you in a month and see how it’s going.

Janine E. Guglielmino, MA (45:42):
Thank you. So definitely see a theme here that we should have a live session on sexuality and intimacy at the 2024 Conference on Metastatic Breast Cancer. We thank you for all your questions.
Stephanie, I wanted to ask you to talk a little bit about the most common psychological impacts of metastatic breast cancer that you see in your clients.

Stephanie Broadnax Broussard, LCSW, ACHP-SW (46:06):
One of the biggest things that I see is, and Kelly alluded to this yesterday, is kind of the grief, and holding it and how we hold it. I think there is, especially in the metastatic community, I think there is this battle between, I’ll say it again, toxic positivity and hope and the reality of the circumstances. And how do we make space for all of the emotions? Because I think sometimes, in certain spaces, we can lean so much into the positivity that people who are sitting with their anger and their frustration and their disappointment feel like they don’t belong in the space because there’s not room for that with their hope. And so one of the things I work with my clients on, and I can’t believe Kelly said it yesterday, but the, “And, but.” That the two things can be true. I can be extremely grateful that I am still here but mad as hell that I had to deal with it in the first place, right?

The two things can be true. And so how do we hold the incongruence? How do we make sure that their feelings feel really valid? And for those that need meaning from this, how do we help to make meaning of it?

That’s not everybody’s course. Everybody isn’t like, “This happened for a reason.” That’s not everybody's perspective. And so how do we hold space for those that are like this happened for a reason, but also hold space for those who are like, “I don't know why the hell this happened,” or “Why this is me,” or “Why me?” And so how do we help them deal with those feelings as well and cope with the grief or anxiety or depression that comes and just overall adjustment to living with metastatic disease.

We do also a lot of legacy work. I could go on about perspectives about that. And for some people it can be difficult when we are forced into legacy work and it’s taken a different tone, because sometimes people think everybody has a legacy they want to work on because they’re metastatic. That’s not true. I found that to be not the case. And so I let my patients really drive what it is that they bring into the space and what we focus on. I ask them, “What’s the work like? What is it that you need in this space?” And we try to sit and figure it out and everybody’s work can look different, but we try to let them drive. It’s not my job to say what your task is and give a checklist because you’re metastatic, this is what you should process and what you should do and who you should have conversations with. That’s not it.

And especially because people are living longer it’s a lot of work and processing in every phase is different. I don’t like the term new normal, but the reality is that the decks are always shifting. And so we just have to help people cope with what that looks like and set their expectations for themselves and also support their families with supporting them. Because I think there’s just as much in families and partners, cancer is happening to the individual, but it happens to the system. And so how do we help them hold space for others but also making sure that they are capable of managing and understanding that they don’t have to neglect their feelings in order to care for everybody else.

Janine E. Guglielmino, MA (49:10):
Dr. Dizon?

Don S. Dizon, MD, FACP, FASCO (49:18):
No, I think you summarized that exceptionally well. I don't think I have anything more to add.

Janine E. Guglielmino, MA (49:25):
Wonderful. Well this has been the fastest hour that I think most of us have ever experienced. And so I’m going to ask you a last question before I pass it back to Cathy to close us out.
What have we not covered about living well with metastatic breast cancer that you would want to leave this community with as we go back home today?

Don S. Dizon, MD, FACP, FASCO (49:47):
Well, you know, I think I was telling Catherine, one thing I was happy to see happen here is that people were sharing their stories. You each have a story and each is unique and each is important. Your doctors and the teams may not demonstrate the impact you have on the center or their lives, but just know that we feel your diagnoses and we feel the loss when people that we’ve cared for die. And the loss is acute, even for people we get to know on social media, who we’ve never met before. So the relationships that you make in this room and in your own lives are important. And at least I know on this team up here, we respect and remember. And I remember every single person that died of this disease.

Stephanie Broadnax Broussard, LCSW, ACHP-SW (51:02):
Thank you for saying that, because I think it’s sometimes dismissed that people who do this work, for some people it may be a job, but I think we really are intentional about, we want to be here and we’re honored to be able to serve you, and so thank you for saying that.
I think for me, one of the things I hope people always take away from any exchange that I have with them is that your voice is important and it’s powerful. I’m a realist and so I understand that you may not always get access to everything that you need because someone’s offered it to you. You may not walk into the spaces and people see you the way you deserve to be seen. You may not receive everything that automatically you should be informed of. You may not get access to all the tools, you may not get access to a comprehensive team. You may not have access to teams like this. But I want to make sure that you’re aware that advocacy is so important.

Your voice is so powerful and it may feel like it’s always a fight. “I shouldn’t have to ask for everything. I shouldn’t have to ask for people to take care of me. I shouldn't have to ask for you to see me.” And I just want to encourage you to not never stop asking, never stop taking up all of your space, never stop making sure that people who are there in charge to care for you show up for you as they should.

And sometimes, in just all honesty, because once again, I’m a realist, people can get lost in the day-to-day. Sometimes people get lost in the task assigned to them as medical professionals, but that does not mean that well-intended people cannot harm us. That still hurts, there’s still harm that comes. But I believe that there is so much power in your voice and your ability to speak up for yourselves.

So even when you get tired, even when you’re frustrated — so the caregivers in the room making sure that you check in about “What spaces can I help advocate for you? Put me in coach. Where do I need to call? Where do I need to speak up?” — never stop advocating for yourself.

And that’s how we change what the health system looks like. When we all come together to advocate for what we deserve to see and what we know is impactful. Where we use evidence-based research to say, “Hey, this is different. People have different outcomes.” When we can do these things, help us make sure people get access to this. This is how we change what insurance provides, is when we use advocacy and the power of your voices and your collective experience to change what things look like. Don’t stop. Even when it gets hard. Wipe your face. Have your cry. Cause we going to have emotions. We going to lean into ’em, but make sure you don’t, and I’m not using fighting like the cliche “fighting,” but like, don’t stop. That's just my, I beg of you. Don’t stop.

Janine E. Guglielmino, MA (53:48):
Thank you. Thank you so much. Thank you to both of our speakers.