 Can you discuss the factors that are taken into consideration when you are trying to determine a treatment plan for metastatic breast cancer?

The most important factors are definitely the subtype of the metastatic breast cancer, where has the cancer spread, what tumor involvement there. It's really important to understand what proteins or mutations are targets that could be applicable with the tumors.

 Similarly, how does quality of life play a role when you're trying to determine your treatment options?

 It is definitely a factor. I would say that there's definitely different goals. As far as quality of life and dealing with cancer, side effects and things like that can run the gamut. Side effects could be hot flashes, nausea, gastrointestinal issues. You could be in and out of the hospital. So those types of things can be considered, based off of what the patient's goals are. Someone on the younger side might want to go through more aggressive treatment. With metastatic breast cancer, you're are always going to be in treatment. There isn't a cure, per se, or a stop of your treatment. So, you're going to stay on treatment until that one fails, and then you're on to the next treatment in order to keep the cancer at bay and controlled.

In each instance, a patient will have to make that decision based off of what treatment options are available, and if they can tolerate those side effects. I also think it’s really important to not necessarily write off certain treatments because usually, if you're having that conversation with your doctor, and you have a good support team around you, there's ways to mitigate those side effects where it necessarily doesn't have to completely rule out a particular treatment.

 In the metastatic breast cancer setting, do you think it's important for patients to comnsider getting a second opinion as well?

 Oh, definitely. I mean, we do have standards of care, which are accessible and are updating all the time. But you have different cancer centers that have access to more treatments and innovations, and might be on the pulse of more available treatments than others.

Also, there are actually doctors that don't understand metastatic breast cancer. I've come across doctors that are not really into or not abreast of the latest treatments and innovations. And so they're thinking that once you hear metastatic that you should be in a palliative state and, you know, on your way out. That is definitely changing. Metastatic breast cancer does not mean that it's necessarily a death sentence right away. So, if you are presented with treatment options, definitely go get a second opinion from someone else just to make sure that that is the most effective treatment. There are so many new proteins, so many new targets, so many new options, and that particular cancer center might not have access to that innovative treatment that actually would be the most targeted and effective to treat your breast cancer.

 Can you discuss how treatment for metastatic breast cancer works?

 There's now consideration for levels of metastasis. So, you can have bone-only metastasis. There are metastasis that is not just necessarily focused on a subtype of breast cancer in order to dictate that particular treatment.



For the most part, they're going to think about what is the most effective target that they could specifically hone in on that will control that cancer before they get to the more aggressive chemotherapy, which is really just targeting all cells – cancer and healthy cells. So if they could really have treatment that is precise and targeted, where the treatment can really focus and target on what is actually making that cancer go and thrive and move all around the body, they can suppress that. Then it buys you time and it can be controlled. And that's really what this is all about.

We want metastatic breast cancer to be a chronic illness where that cancer is controlled. It really can't get a leg up and spread throughout the body and wreak havoc. And if you didn't understand what fuel that cancer is operating off of you can hone in on it. Target and suppress it. And it really doesn't have a way to get all around the body and cause so much damage.

 Can you discuss some of the exciting innovations that are coming?

So it's really great that we have the targeted therapies that have been developed in the past eight months, including Piqray (alpalisib). Most of those patients, we've now validated that if they fail on a CDK4/6 inhibitor, that they switch to that particular drug and have a durable response and their metastasis will be controlled.

There are also new targeted therapies for triple-negative breast cancer, which is a space that has been lacking for a long time. Now we have a number of drugs that are available that are targeted therapies for triple-negative breast cancer.

We've really found ways to live for a longer period of time with drug combinations, and our cancer is functioning as a chronic illness at this point. So that's really exciting. And now they've identified hundreds of new proteins, mutations and targets that they're developing to manipulate in that tumor microenvironment or create stress on those cancer cells based off of that environment in order for them to trigger to themselves to commit suicide, in a sense, which is really exciting. There's so many new developments with immunotherapies and targeted therapies where there's a whole new realm of proteins and targets outside of just the standard hormone receptors and mutations that we can go into and target now. So it's really exciting.

 What do patients with metastatic breast cancer have to look forward to most?

 I've had so many conversations with researchers who say, “You know, there's people attached to these tumors that we have to think about, with cardiac effects and quality of life.”

In the future, you're going to see more targeted therapies, and definitely more emphasis on oral therapy, so you're not actually bogged down going to the hospital every week, hooked up to an IV. You actually do have that portability, where you have an oral treatment, and it has your cancer controlled. That’s really something that folks can look forward to,

Doctors and researchers are really taking this into account to think about effective combinations that are going to address this particular cancer based off of characteristics: their age, the subtype. All of these factors rolled up together help us to think about what is the most targeted, personalized treatment that we can provide, that will create that long-term, durable response, increase survival, and also factor in quality of life.

 what would you say is your biggest piece Advice for a patient with metastatic breast cancer who's trying to decide their best treatment option?

Definitely get the genomic testing. That is so important. Get the genomic testing in order to get that molecular profile to understand what proteins and mutations are really predominantly expressed by that cancer. And it's going to change when you have a recurrence, or if that cancer has now developed a drug resistance, it's going to change. So, in each instance, let's focus on: What's the new coding here? What's going on? What is this cancer fueling off of? And then that way, you can target that. And there's evidence to show which ones are actually the most effective for particular proteins and mutations. Once you hit those targets, that's going to really tell your team and you what it is that they can hone in on and what they can do in order to keep that cancer under control.



Treatment for Metastatic Breast Cancer

why is it so important for patients to consider joining a clinical trial?

 Oh my goodness, clinical trials are the best because you get the best care with clinical trials. I mean, you are going to be privy and receive the most innovative and on-the-pulse treatment for your particular breast cancer. And you're going to really be monitored and you have the most quality care. You have so many layers and eyes on how you're doing in order to see whether or not if it is effective. And so it's almost as if you're getting the platinum package when it comes to cancer care when you enroll in a clinical trial.

 How can patients try to learn more about clinical trials and to see if they might be eligible for one?

 The best one, I would say, start with your immediate center. That way you're more comfortable, and you've kind of developed a relationship with your current oncologist. maybe ask whether or not they have clinical trials available at that particular center. Or if they're ones that they're eligible for, even if your treatment is going good right now think about: What happens if this particular treatment fails? Do you have me in mind for any clinical trials? If, you don't have me in mind for a clinical trial, why not? Which ones are for my type of cancer? Will I still be eligible for a clinical trial? If I go ahead and choose that drug, do I have any current side effects or issues that could prohibit me for being eligible for a clinical trial?

Also, there are websites online…There’s a bunch of support organizations where you can go to where you can identify and look up clinical trials for your particular subtype of breast cancer. You can isolate it and filter where it only provides the ones that are for metastatic breast cancer and pull those up. Look for those ones that are near your area. Think about travel – how far you would like to travel because you are going to have to be seen and tested a lot more. So just think about how could you fit this into your life. Look it up by the zip code and find a clinical trial in your area. And then that way you can see what it is that they're testing, and they usually include that in the clinical trial information. If it's a particular drug, if it's a particular treatment, they have a hypothesis that they're trying to study and test. And so why is it that they want to particularly focus on this? Why is it so much more effective in their mind? And could this benefit you with your particular type of cancer?

Are there any misconceptions that we can talk about with clinical trials to try to negate?

 For one with the metastatic breast cancer trial, you're not going to get a placebo, they're not going to give you no treatment at all. So usually there will be cohorts where you know that you might be randomized and included in the cohort that is testing a particular drug, or you'll receive standard of care at least.

Another one is that it's expensive. There are certain costs that are going to be covered by your clinical trial. So ,it's not something that is necessarily unattainable, or it can't be incorporated into your care.

Another one that's interesting that's not true is that it's going to make your cancer worse, or that it's going to make your cancer spread more, or that they want you to be a guinea pig, and they're not going to treat you and they're just going to watch you deteriorate. There are guidelines and regulations as far as the FDA is concerned, really rigorous, as far as the testing and how they can treat patients during a clinical trial. And so I know that we've had horror stories in the past, but now there are regulations due to that. And so you will get the platinum package when it comes to clinical trials and get really great treatment as far as your particular cancer with so much attention and focus put on it.

 Are there any clinical trials that are ongoing that we can talk about?

 They're testing your particular genomic profile to see if there are certain drugs or to hone in on your particular cancer. That's definitely one I would say that if you have triple-negative breast cancer and you're having issues with your particular treatment, or even if you are other subtypes, and it's just not at the level where you're having good quality of life, or you're having a lot of pain or you're having a lot of side effects, look into a clinical trial. There might be one that is actually a bit more effective. So, some of the pharma companies are sponsoring clinical trials throughout the area. A lot of it is expansion on immunotherapies, targeted therapies and newer inhibitors to focus on and so those are the ones that I think have a lot of promise that you can look up in your area because it is less invasive. It's more targeted, and it creates a more durable response because it is suppressing specifically what is fueling your breast cancer.

What would you say is your biggest piece of advice for a patient who's considering joining a clinical trial?

 My biggest piece of advice would be to be open and be just transparent about everything that you're going through. Talk about your fears, talk about your side effects, talk about your current treatments and what's working and what's not working. They really need that information to understand what works best for you. I know a lot of patients sometimes they're thinking, well, if I share that I'm having this side effect, they might take me off the drug. And it's always tempting to stick with the devil than to try something different. But if you could have less side effects and less pain with a more effective drug, because it's targeting specifically what’s fueling that cancer, then it might be worth pursuing that. So I would say, just be open.

Think about the possibilities where you're not necessarily holding yourself back when it comes to clinical trials and shop around. And if you feel that that respect isn't there, or that relationship isn't there, by all means, go ahead and keep looking for second opinions. It’s not being disloyal to your oncology team or your doctor. It really is about you. It is really about you and your cancer and making sure that you get the best care possible.

Joining a Clinical Trial

 What would you say is the biggest challenge right now in metastatic breast cancer?

 The biggest challenge for metastatic breast cancer is the lack of metastatic breast cancer funding and research. It boggles my mind because metastatic breast cancer is the breast cancer that you die from. You don't die from breast cancer in the breast. Metastatic breast cancer research should comprise at least 50% of all breast cancer funding. We find that even now, with early stages, if you do everything perfectly, and you are in remission, that you still have a 35% chance of becoming metastatic. And so to me, it just makes sense for us to learn like from other illnesses like HIV/AIDS, where they focused on what was killing people, and now it is a chronic illness. So, I do think that we need to do that same thing with metastatic breast cancer.

 Are we doing anything to try to address the funding issues?

 METAvivor has a grassroots effort on the ground, state by state talking to the government, Congress and NIH to increase that funding. I think we've been operating on this old methodology and now we have to catch up with the science and understand that just because you might catch it early or detected early, which is important, also focusing on what is creating that metastasis and the metastasis is what you die from. And that's all we need to focus on to make sure that we can control it for the long term.

 Are there any other disparities that are associated with metastatic breast cancer that we can discuss?

 There's also the oral parity issue that does create a disparity. When I say oral parity, there are certain treatments that are not covered because of our health care system structure in our country where if it is a drug, it's considered to be a prescription. If it's treatment in the medical setting, such as IV chemotherapy, that is covered more so than oral treatments and, now, most of the most innovative drugs are oral treatments. So if you are on Medicaid or Medicare and in a state without oral parity, then that can create an exorbitant amount of out-of-pocket costs and that creates a barrier for patients to have the best treatment for them.

There are also some health insurance coverages, junk plans that require step therapy. So meaning in order for you to get access to this drug that actually might be the best one for you, we need you to fail on that drug before before you get the drug that's actually best for you. That actually can cause serious implications to a person who is dealing and living with metastatic breast cancer.

Also, access to clinical trials and access to diagnostic screening and genomic testing. These are issues where you might not be able to afford some of these tests or the out-of-pocket costs can range from $300 to $1,000. That is going to definitely be a barrier to you. Getting that screening, getting that testing in order to hone in on that best care for you.

We have passed it and various states at the state level for those tests to be provided, including ultrasounds and MRIs and having access to that for patients that have family history or dense breasts and not able to get the initial screening accuracy with a mammogram. But we really need that nationwide and not just state by state.

Another big factor is just the barriers to access to clinical trials, access to particular treatments, understanding that education barrier that also is a contributor to disparities. We have a myriad of issues when it comes to making sure that patients have that comprehensive model, where it's not just the medical access. That's definitely a big issue.

Nutritional factors, social economic status are all things that are a combination of factors that are impacting a person staying on that continuum of care. When you notice that there are different outcomes and different communities, in particular in the metastatic and also in Black and Hispanic communities. It's because of these other factors that are coming into play.

 How can we help to connect patients so that we can address some of these barriers to access to care?

 We're finally starting to understand through research and evidence-based studies that all breast cancer is not the same. All patients are not the same. So, we can't really have a trickle down, wide sweeping brush. We have to understand that rural communities are more impacted by disparities just due to travel issues, lack of the latest treatments in their particular area, having those challenges of getting access to clinical trials and rural communities, not having nutritional resources that can support that wellness path that they're on when they're taking care of their cancer, access to clinical trials. Usually, Black patients represent only 3% of the population within a clinical trial and that definitely has to increase. And then just having the travel barrier, meaning that it's usually 60 minutes or more for them to reach their cancer care, and also socioeconomic issues where 70% of Black women are usually the head of their household and single and are the primary breadwinner and have children. So, transportation is definitely an issue. Or there is the issue, “I'm going to take off for three weeks in order to focus on cancer care,” and a lot of times that's not an option, so that creates a barrier. We have to think about these different issues when it comes to lack of PTO, lack of family leave transportation, childcare, access to clinical trials, nutrition. These are all different factors that could be embedded and created in a lot of our cancer care systems at the community level.

 Does METAvivor have any resources that we can offer to patients?

 We have our peer-led support which we are practically in every state where we can connect folks to access and resources on the ground. We do take a lot of calls in order to guide folks through that process. And we're trying to develop even more support systems so that we can connect people with resources when it comes to clinical trials and support resources in order to deal with some of the barriers that come up when you're dealing with metastatic breast cancer.

 If there's a woman that's facing one of these disparities what is your biggest piece of advice?

 I would say check to see if there's an oncology social worker at your cancer center, and be open, talk about all the issues. And don't wait until you're in a crisis in order to receive that support. Preemptively receive that support so that you can think about what different challenges you might be facing because this is a long-term game. This is a long-term journey. You're going to be on this path for quite a while. So you have to think about structuring your life: having kids, transportation, managing your job, or maybe not working anymore. What does that look like? You should factor in that full picture so that you have all the support in place to make sure that she can go ahead and tackle your cancer the best way that you can.

Addressing Disparities in Metastatic Breast Cancer

Outside of Treatment in Metastatic Breast Cancer

 What are some ways that a metastatic breast cancer diagnosis might affect the family dynamic, whether it be with your partner or your children or your family?

I'm sure a metastatic diagnosis of any cancer type changes a lot of dynamics within the family. I mean, first, you're shocked that this is the diagnosis that you're facing. There's fear, there's anxiety. And you might be the patient that's going through all the physical changes and the treatment but that doesn't mean that it's not weighing heavily on your your family, your parents, your partner's your spouse, your kids. And so I really think from the get go, it's important to open In the lines of communication and make sure that everybody is on board with either knowing that they're going to be sharing how they're feeling openly and and letting the patient sort of drive, how the conversations are going to go. But the patients also have to be respectful that this has an impact on the whole family's life.

If somebody does have young children, do you have any advice on how they can have these conversations with their kids or maybe not even have the conversations with their children about their diagnosis?

Sure. When I was diagnosed, my daughters were two and four at the time. And so I really struggled with what's, what's the right way to tell them what's too much what's too little, because obviously, it's going to be a lifetime experience for them, but at the same time, they don't really know any different when they're that young. So my first piece of advice would be to wrap your head around. What you think your treatment plan is going to be before you even talk to your kids? Are you going to be on a type of drug where you're going to lose your hair? Are you going to have surgeries where you're going to have a long recovery period. And once you kind of know what it is that you need to explain to your kids, you can then break it down into what's age appropriate, because we don't want to scare them into thinking that Mom's going somewhere tomorrow. And this is imminent, but it is a lifelong disease. So my kids were involved. When I shaved my head, we had a hair shaving party to make it a little less scary. I didn't want to walk into the house one day, and all of a sudden be bald, and my two year old has no idea what's going on. But at the same time to breaking it down into what they needed to know. I also would say if you can have the same caregivers, if you're going to treatment, to kind of continue to make their routine as normal in a very abnormal situation

Are there any resources that are available that you can recommend to kind of help children cope with their parents diagnosis?

Absolutely, I would say have a conversation with your hospital systems oncology social worker, that was where I kind of first started to find out different programs that might be available for my kids. If as we're going through treatment, something arises, I was often in touch with them just kind of asking for their advice of how would you frame this conversation with a kid who's this age? It's also difficult in that when you're raising kids, you never know if the behavior that they're exhibiting is because mom has cancer or if it's just a normal kid thing. And so that's where I found difficulty in my head kind of going over, you know, is this cancer related and that social workers hospital system were really great at connecting me with local resources. That kind of helped me think about the way that I was going to talk through what was happening before I actually sat down and talk

Do you have any advice that you could offer to other parents? Like I know sometimes we've heard some parents say, don't say the word sick. Is there anything like that that you can offer?

Absolutely. They made it very clear not to say that Mom's going for medicine, because you don't want a kid to think that anytime they come down with an ear infection or cold and flu, and they just have to take over the counter stuff. But this is not the same as what mom is taking. And that cancer isn't contagious. And just like every person is different. Every cancer is different, too. So when you are out and about and you see somebody who looks sick, that cancer is different than mom or dad's cancer, and just to kind of keep them from fearing the absolute worst from the day you are diagnosed.

Can you just talk about some of these, you know, emotions that people can feel and maybe how we can help negate these issues?

Sure. So for me, when I was diagnosed, I was 35 years old. So I kind of fell in that range where I had my husband, that was having emotions. I had my parents who also are in relatively good health. And so everybody kind of goes like, why is this happening to her and I know that when you're in this younger diagnosed generation, sometimes parents feel guilt, that it's their child, but at the same time, I'm raising children. And then there's my husband too, who wants to swoop in and just try and fix it all. So we really had to sit down and have a an honest family discussion about how are we going to deal with this? What are we going to talk about in front of the kids, getting grandparents on board with what you've told your children so that they're not feeding them information that you don't feel comfortable with them? Sharing too, it's just kind of rallying your tribe and making sure that everybody's on the same page and that everybody feels comfortable sharing open and honestly what they're feeling based on your diagnosis.

Definitely. And so, you know, obviously, being a mom can be a busy job in and of itself. But, you know, when you're faced with a metastatic breast cancer diagnosis, there's this issue of trying to have balance and you know, fitting treatments into your schedules. Do you have any advice for other mothers who are probably facing the same exact thing?

Sure. And that was one of the hardest things is I was so used to saying yes to everything for my kids and being involved in all of their activities. And when I was going through my act of chemotherapy, you know, the traditional sense where I was feeling really gross and hair was falling out. It's a it's a mental struggle to know that you're going through this so that you can be here for your kids, but at the same time, you can't you feel like you can't go to the field trips or you can't chaperone this event or you can't shuttle them off to the all the different actions That you, you were pre cancer. And so I think to give yourself grace to know that this is a moment in time and to find your tribe, and figure out who else you can lean on. I know sometimes as moms, it's really hard to ask other people for help. But in this situation, people are often looking for ways to help you and so the clearer you can be and how they can help you with your parenting responsibilities, is so helpful. And it's also good for the kids to to know that they have a few people that can come in and help so that mom can feel a little bit better on the days when she's not feeling so great so that when she bounces back, she can't get right back into the thick of things. So So what would you say is your biggest piece of advice for a woman with metastatic breast cancer and trying to balance and cope with her family dynamic while also obviously dealing with her own disease? Yeah, I my biggest piece of advice would be Don't be afraid to ask for help. Whether that comes from your family, from your friends, from local support groups that you get involved with metavivor has wonderful peer to peer programs throughout most states in the country that you can connect with other women living with metastatic breast cancer. And that has been so helpful to me to connect with other moms who have this diagnosis and are also trying to figure out how to raise their kids as best they can in spite of it.

Learning the Ins and Outs of Metastatic Breast Cancer | CURE^® Speaking Out

Treatment for Metastatic Breast Cancer

Joining a Clinical Trial

Addressing Disparities in Metastatic Breast Cancer

Outside of Treatment in Metastatic Breast Cancer

Talking with Your Family About Metastatic Breast Cancer

Latest News

Learning the Ins and Outs of Metastatic Breast Cancer | CURE® Speaking Out

Treatment for Metastatic Breast Cancer

Joining a Clinical Trial

Addressing Disparities in Metastatic Breast Cancer

Outside of Treatment in Metastatic Breast Cancer

Talking with Your Family About Metastatic Breast Cancer

Latest News

Learning the Ins and Outs of Metastatic Breast Cancer | CURE^® Speaking Out