How Komen’s PCC Supports Those Living with MBC and Caregivers

[00:00:00] Adam Walker: From Susan G Komen, this is Real Pink. A podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room. Metastatic breast cancer, also called stage four, is when breast cancer is spread beyond the breast to other parts of the body. It’s normal to feel overwhelmed and scared when you’re living with metastatic breast cancer, but you’re not alone. Thousands of people in the U. S. and around the world are living with metastatic breast cancer, and Susan G Komen offers many support resources to help you through its patient care center, where patient navigators are available to help provide you with information about metastatic breast cancer, information about clinical trials, access to resources, emotional support and more.

Joining us today is Toni Lee, Senior Manager of Patient Navigation. Toni is also a breast cancer survivor herself, so this work is very personal for her. Toni will help us understand how Komen’s Patient Care Center supports those currently living with metastatic breast cancer and their caregivers. Toni, welcome to the show.

[00:01:18] Toni Lee: Good afternoon. Thank you. I’m excited to be here. 

[00:01:21] Adam Walker: I’m excited to have you. And this is such an important topic. So I really appreciate you taking the time to talk to it. So the doorway to Komen’s patient care center is the free breast care helpline. A call to the helpline gets people immediately connected to a patient navigator like you, and you can help people across the country, no matter where they live.

We know that each person who reaches out is an individual person with a unique situation. So why is it so important for Komen’s navigators to understand the differing needs of those living with metastatic breast cancer versus those that are diagnosed at an earlier stage? 

[00:01:58] Toni Lee: Yeah. So first I’d just like to from my own personal experience, acknowledge that anytime you receive a cancer diagnosis, no matter what stage, it can be very overwhelming and frightening, but we definitely acknowledge and recognize that those that are diagnosed with a metastatic breast cancer diagnosis that can be very devastating.

And so I think it’s important that our navigators understand, and they are aware that those living with metastatic breast cancer do have different needs. They often present with a unique set of challenges. Some examples or conversations that we’ve had with many of our metastatic breast cancer patients that we’re navigating they often are faced with a challenge about how to talk to their family, how do they communicate that this disease has no cure and that it is terminal. And that then presents, some unique emotional needs, they have to consider legal needs for end of life care. Do they have a will in place? Will they have to create one? Do they have advanced directives in place? What about life insurance? Do they even have a policy? Do they have an an adequate policy to help cover those end of life expenses to help alleviate the burden from their family once they’re gone? They have to consider employment needs. This is going to be ongoing treatment. This is for the remainder of my life. Will I be able to continue to work? Will I have to modify how I work or the type of work that I do? Will I have to take medical leave? And then, they also have to consider, I think what’s different from early stage breast cancer is, there is no end date to their treatment.

This is going to be ongoing. Until they, consider the fact that, they may have to stop treatment, or, they’re going to have to consider that eventually their treatments are going to stop working and they have to think about new ones. They have to be aware of research and all of the kind of new emerging therapies that are coming out. What are the latest clinical trials that are coming out? I think just to tie it all in, it’s, the unique needs is it’s going to be ongoing and consistent. And there’s some additional layers that MBC patients have to consider. And I think, Komen navigators we’re having those conversations with the patients so that we can best identify their needs. And then that we can train and equip our navigators with the tools and the resources that they need to best support those metastatic breast cancer patients. 

[00:04:20] Adam Walker: Awesome. I love that. And thank you for breaking down those differences. That really is very helpful. So how do the Komen patient navigator support individuals living with MBC? And getting the most out of their care teams and what kind of conversations do you have with them about clinical trials? 

[00:04:36] Toni Lee: Yeah. Navigators support individuals living with metastatic breast cancer by ensuring that they are connected to high quality care. And we do this through empowering the patient by providing like some self advocacy tips to enhance that patient-provider communication. And some of those tips are, we definitely encourage and recommend our patients that they educate themselves on their specific diagnosis, do your research. And then we’d like to educate them about, who on their care team is going to be the right person to address their needs. And then just educating them about, you’re going to have a multidisciplinary team that takes care of you.

You’re going to see many different providers, and just being able to understand their roles helps to really optimize the care that you get from each provider. Another way that we help support to get the most out of their care team is helping to formulate questions to ask the doctor ahead of ahead of time, ahead of their appointments, so that they can maximize their time with their providers and get the answers that they need to their questions.

And in fact, Komen has a tool called Questions: Ask the Doctor that we can provide. Or we can help formulate a list of questions. Another important piece that I like to educate our metastatic patients on is being part of what they call the shared decision making process. It’s very empowering and important that the patient communicate their preferences and their values when determining a treatment plan and that they work together with the provider to come up.

What is the best treatment plan for me? And then lastly, too we often hear whether it’s at the time of diagnosis or, they’ve been working with this provider and in treatment for a year or more, that they’re, they feel they’re not being heard or they think that the treatment is not working. Don’t be afraid to seek a 2nd opinion. I’ve often, had conversations with our patients that, I don’t want to offend my provider. I don’t want to hurt their feelings. And in fact, most providers are actually very supportive and encourage seeking a 2nd or 3rd opinion, and they can often be the kind of the gatekeeper to that. They can help facilitate that process by doing that kind of peer to peer referral. And then Komen’s navigators can also support that process by, again, helping you to check your insurance coverage, make sure, those providers are in network or doing the research of what cancer centers or other oncology providers are near you and helping you to facilitate those questions again. What would you ask at a 2nd opinion called consult? And then lastly, I think something else new that I learned recently that we think you seek a 2nd opinion, you have to leave this provider. Oftentimes, multiple providers will work together so that you can remain with your existing provider, but still get that specialty care that you’re seeking as they work together with a treatment plan. 

[00:07:32] Adam Walker: I did not realize that. That’s great. 

[00:07:34] Toni Lee: Yeah. As far as clinical trial conversations, I think our navigators, we mostly provide education around clinical trials, like how to research them, make sure you’re using a reputable site, how to connect to them.

Sometimes that’s just asking if there’s a clinical trial coordinator or nurse or research coordinator within your cancer center that can really, lay out the options and see if there are some clinical trials that you’re eligible for. And I always like to just mention too, with my experience and Komen, always looking through this health equity lens. We often hear from many of our metastatic breast cancer patients who come from historically marginalized communities or communities of color that clinical trials are not even offered. I like to make sure that my patients are educated and that they know that they can at least ask if that is an option and if there is a trial available for them. And two, and then Komen’s navigation services, we’re virtual and we’re accessible no matter where someone lives. One of the barriers too, that metastatic patients will talk about is that, they may live in a rural area and they don’t have access to the academic and the research cancer centers, or, they don’t have access to those specialists who specialize in this treatment. We’re there to help, research and facilitate, or maybe transportation is an issue there. It’s far away. And so we can maybe look at, are there resources available that can support the transport to get you to those academic and research centers. 

[00:09:05] Adam Walker: That’s great. That’s great. It sounds like a lot of support there. That’s fantastic. So I understand that metastatic breast cancer treatments have some side effects. How are you able to help guide patients through managing side effects and controlling pain and what role does support and palliative care play when guiding patients through managing those side effects?

[00:09:26] Toni Lee: Yeah so I think I’ll just circle back again to the self advocacy tips and this patient empowerment that our navigators provide. Not only is it important to be part of that shared decision making process when you’re initiating treatment or determining a treatment plan, it’s important to continue to take that active role throughout treatment that includes side effect management.

I’ve had many conversations with some of my local metastatic breast cancer patients that, they say, I’m experiencing these side effects or I’m having pain and I’ll ask “Have you, informed your provider? And they’ll say “No.” And I say, “Why? And they say, “Because, I think I’ve been doing this treatment and that’s just what it comes with. And I just figured I have to accept it.” So I definitely like to educate them that please speak up, make sure that you are informing your provider of any side effects or pain or any new symptom so that they can one, they may have some therapeutic remedies for the side effects. And pain and they may be able to adjust your treatment so that you can maintain quality of life.

And I think another kind of way that navigators can support is to facilitate a referral or educate about palliative care or integrative medicine, a lot of cancer centers now are starting to have these integrative medicine clinics within the cancer center. And really, sometimes what it requires is just a referral from the provider. And those could be very helpful in managing pain and side effects and so that they can still maintain that quality of life. It’s always a balance. 

[00:10:59] Adam Walker: That’s good. Okay. So that’s great advice. So next I want to talk about financial toxicity. What is it, first of all? And how does it affect metastatic breast cancer patients? And what kind of resources are there available to help with that? 

[00:11:13] Toni Lee: Yeah. So Komen actually just put out a white paper on financial toxicity. And in that report, it stated that up to 73 percent of adult cancer survivors experience financial toxicity, or that’s also the damage that’s inflicted on a personal, on personal finances by the out of pocket costs for their medical care due to a cancer diagnosis. And it also report that breast cancer is one of the most expensive forms of cancer to treat. And we know that late stage or advanced cancers are very expensive, those treatments. And almost 50 percent of breast cancer patients report that even mild financial toxicity affects treatment choices, their quality of life, medication adherence, bankruptcy rates, and even mortality.

And so one of the ways that our navigators can support our metastatic breast cancer patients in helping to either reduce the risk of financial toxicity or prevent financial toxicity, is we often review and make sure, optimize; make sure that patients understand that they should be optimizing their insurance coverage. You might be wondering what does that look like? Those would be things that we can review the plan with them to make sure that they have adequate coverage. That they understand what a deductible and they’re out of pocket expenses are. What’s co-pay versus co-insurance? Understanding that insurance terminology. And an example of having adequate coverage, oftentimes many of our Medicare recipients we assess that, are you also eligible for Medicaid because they refer to that as a dual eligible and because Medicaid can help offset the premium costs and may actually fill in some of that 20 percent that patients are often responsible when they have Medicare. Or do you need to up your coverage and change plans?

Changing plans isn’t as easy as let me just go tomorrow and change my health insurance plan, often that only occurs when there’s an open enrollment period. So whether you have employer based coverage, there’s usually a set time that you can change your plan. Whether you are seeking plans through the affordable ACA marketplace or the Obama care plans, open enrollment begins November 1st. Medicare has an open enrollment period but at least knowing that they could, but they do have to be aware of when they can. And then also, I think one of the most underutilized resources when it comes to preventing financial toxicity or reducing that risk is knowing that you can if you have a a claim denial from your insurance company, do an appeal. Our navigators can provide a checklist for the appeal process. We can help you determine what paperwork you need to get together, what steps you need to take, and then don’t be afraid to ask your provider, pull your provider and have them go to bat for you. Oftentimes, their clout, their weight when they say that this is medically necessary and that you have to have this treatment, particularly with our metastatic patients, they often are in need of many different scans and PET scans in particular, usually come back denied or sometimes their oral chemo meds, if it’s a brand new medication insurance isn’t covering, it’s denied or even with insurance those things can be thousands of dollars a month, so don’t be afraid to pull your provider in to go to bat for you. And then I think there’s a statistic that even, once you submit an appeal, 60 to 70 percent of appeals result in an approval. And then, lastly, I think our navigators, we assist with applying for disability insurance again, what are the steps that you need to take? What are what’s the documentation that you’ll need? And then we leverage other financial assistance resources, such as Komen’s financial assistance program. Is there a drug manufacturer prescription assistance program that can cover the cost of those oral chemo meds and any other financial resources that can help to offset living expenses?

[00:15:14] Adam Walker: That is a lot of stuff that you’re able to cover. Wow. I’m just hearing you talk about all the complexities of just even the insurance side. Like I love that you’re able to cover all that stuff. And speaking of more stuff than I even realized. So let’s talk a little bit about caregivers. I’m not sure that people know, that the patient navigators working with Komen’s breast care helpline are actually available to support and assist caregivers as well, which I also did not realize until this conversation. So what unique challenges do caregivers face and how is Komen able to best support them?

[00:15:47] Toni Lee: Yeah, we often have caregivers reach out to our helpline and definitely encourage any caregiver out there who’s in need of assistance to please reach out and get connected to a navigator. Yeah. I think one of the unique challenges that caregivers face is they’re often torn between wanting to help, but not sure on how best to support their loved one. Or they may not be sure. “What do I say?” And just acknowledge too that caregivers also experience their own fear or worry. And it’s important for them to, acknowledge those feelings and get the support that they need. But oftentimes, our navigators will emphasize the importance of just having that open and honest communication between the caregiver and their loved one, have their loved one provide specifics on how they can help, how they can best support or ask, what is it that you do need help with?

It could be they need help with the chores or they maybe they need you to transport them to and from their treatment appointments. Or, maybe your loved one feels good and they feel well enough to continue to do some of those things. And so I think it’s just one, have those specifics; and that’ll help guide where you can best support and then just be mindful of your loved ones wishes. And then make sure that you’re, the caregiver that you’re getting the support that you need. And our navigators can help, make referrals to counseling services. They do have caregiver support groups. Do you, are you in need of respite services? Do you need a social worker? And financial resources too, they often call about that we can connect them to for their loved ones. 

[00:17:21] Adam Walker: I love that you provide that support and that service. That’s really amazing. It’s so important.

[00:17:26] Toni Lee: Yes. 

[00:17:27] Adam Walker: So Toni, at some point, patients may decide to stop treatment for metastatic breast cancer. How do patient navigators at Komen support people as they think through end of life options and care? 

[00:17:40] Toni Lee: Sure. Yeah. And this is definitely a tough point in someone’s treatment journey. I think individuals living with metastatic breast cancer, they may decide to stop treatment for various reasons. Like I mentioned earlier, they may have completed several lines of treatment and it’s no longer working. And maybe they would like to just preserve their quality of life for the remaining time that they have and or maybe, they received a diagnosis and decided initially they don’t want to do treatment.

I think just being respectful of their wishes is important. And then our navigators can support by educating about hospice and palliative care options. We can help facilitate or make referrals to those services. Again, we can assist with those kind of administrative pieces of having a will drafted. There are some sites where you can do that for free. Having advanced directives in place we’ve assisted with some funeral preparations ahead of time. And I think it’s important to note, to have those conversations with your loved ones ahead of time. So that when you do get to this point. You’re able to just spend your remaining time comfortable with your family and friends. We’ve often connected with spiritual chaplains at cancer centers. So that’s also an option for folks. And then we’ve even continued to do some check ins or follow up with the family after their loved one has passed to check in one, to see how they’re doing, and then if they need any resources or support or bereavement resources too, so tough, but we can still help support through end of life and get them the resources and the support that they need. 

[00:19:18] Adam Walker: I love hearing that follow up with the family and check in that’s, wow.

[00:19:22] Toni Lee: Yeah. And we’ve sent some cards a couple of times. So yeah, I think that’s, I think that’s important piece of it too. 

[00:19:29] Adam Walker: Yeah, for sure. For sure. So Toni, last question do you have any final thoughts or advice you’d like to leave our listeners with today? 

[00:19:38] Toni Lee: Yeah. So I think I mentioned before, Komen actually recently just completed some metastatic breast cancer focus groups with both members from the metastatic community and patient navigators. And those conversations were around, what are the unique needs of our metastatic breast cancer patients, and then what are the training needs or the tools that our navigators can, that need that they need to support better support those patients. And I think just know that those are going to be ongoing conversations.

And as we continue to learn and evolve and understand better, the needs. Then we can better equip our navigators with the tools and resources that they need to best support our metastatic community. And, of course, if anyone is in need of navigation support, please contact our breast care helpline to get connected, or if you’re interested in learning more about Komen’s programs, you can visit 

[00:20:34] Adam Walker: Toni, this has been great information. I already, really admired the helpline and now, and I just talking to you, I just admire the work you do even more. Just hearing the details and the support and all of the things you’re able to do is just, is very inspiring and I really appreciate the work you do.

[00:20:53] Toni Lee: We’re here to help navigate this difficult journey. So please reach out if you need assistance and we’re happy to continue to support and learn how we can better support the metastatic breast cancer community.

[00:21:10] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit and for more on breast cancer, visit Make sure to check out @SusanGKomen on social media. I’m your host, Adam. You can find me on Twitter @AJWalker or on my blog,