Supporting Someone With Breast Cancer

[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.

[00:00:19] When a friend or loved one has been diagnosed with breast cancer, you may wonder how to best support them, and it may be difficult to know what to say or do. Today’s guest has been a Komen patient navigator for the last four years and spends her days talking to people diagnosed with breast cancer, helping to support and guide them through their every need, whether financial, emotional, physical, or mental.

[00:00:43] Laura Greaser is truly sunshine in human form, and she’s here today to to help us understand how we can best support our friends and family members when they’re diagnosed so that they feel loved and cared for. Laura, welcome to the show.

[00:00:58] Laura Grueser: Thank you, I am honored

[00:00:59] to be

[00:00:59] here.

[00:01:01] Adam Walker: I really love it when I get to talk to patient navigators because I feel like what you do is so critical, so important and I feel like I get so much insight And just how to be more empathetic and more helpful.

[00:01:15] So I’m excited about this conversation. So, so let’s, let’s start with your role. So, so like, tell us like, what is your role as a patient navigator? When someone’s diagnosed, what kinds of services are you able to help them with? What kinds of services do you provide?

[00:01:28] Laura Grueser: Well, as a Komen navigator. I can offer personalized support to patients, caregivers and their family members by identifying what their needs are and what barriers to care they may be facing.

[00:01:43] My role as a patient navigator often involves providing educational information about their diagnosis, including treatment options, genetic counseling and testing, clinical trials and accessing care and treatment. very much. I connect patients to resources and financial support too and those can include both national and local resources, because we want to ensure that nothing stands in the way of the patient getting the care that they need.

[00:02:13] Then, lastly, in my role as a patient navigator, a big part of it is just to hold their hand every step of the way throughout this experience for as long as they need, and that could be a day, it could be a month, it could be longer. Because a breast cancer diagnosis can be really overwhelming, whether it’s a first time diagnosis or whether it’s a reoccurrence even.

[00:02:38] And in my experience, I’ve also had patients report a breast cancer diagnosis can feel very, very isolating. With a breast cancer diagnosis, there’s often so much going on in their lives from many different doctor appointments physical issues, surgery, treatments, family, work. Sometimes the patients just report that they need someone to talk to and then feeling reassured that they are not alone as a navigator.

[00:03:05] I’m able to provide emotional support and guidance to help address those feelings also that come along with those challenges. In fact, many of our patients. actually over 50 percent report experiencing some sort of financial or economic barrier too. These can include challenges with insurance including high deductibles or co pays, being uninsured, having to cut back their work hours or stop working altogether.

[00:03:39] Housing and transportation can also be barriers. So I try, I do my very best to connect patients to financial resources and to provide the patients with strategies to address their financial barriers, such as helping them understand their insurance coverage and then assisting them with completion of financial and even pharmaceutical assistance applications.

[00:04:03] So, as a navigator, I am totally committed to ensuring all people receive the support and high quality care that they need every step of their breast health journey. And this is so exciting to me. This is so impactful. Last year, 90 percent of the patients that we navigated in our program, they said that we helped improve their quality of life.

[00:04:30] 91%. That is huge. Love that. Love that.

[00:04:34] Adam Walker: So and so, and you mentioned, you know, one of the big problems that you help walk people through a financial. So before we move further into my other questions, just quick question that I already know the answer to, but I’m going to ask anyway. Does this service cost any money for the people you’re supporting?

[00:04:49] Laura Grueser: It does not cost a dime. This is a free service that Komen provides through our patient care center. And we’re happy to be able to provide this absolutely free.

[00:05:05] Adam Walker: Awesome. I just wanted to make sure we emphasize that so that anybody that’s thinking, Oh, I need help. They know they can get help and there’s no cost to them.

[00:05:12] So so what are the most common immediate needs or highest points of stress for people that are newly diagnosed that you help them walk through?

[00:05:22] Laura Grueser: Well, the most common needs that I hear from patients in my experience is education. They, they need to be educated about their diagnosis. A lot of the patients may need to understand what their pathology report states, what type and subtype of breast cancer they have, what stage their breast cancer is.

[00:05:46] And then they also more than likely will have questions about their treatment, including surgery, chemotherapy and radiation. And then we also often collaborate with members of their health team, healthcare team to ensure that the, that patient receives as much support as possible. I can also then share information about clinical trials and I.

[00:06:11] One of my personal favorites is I use the Komen’s questions to ask your doctor as a resource to help patients have a guide to facilitate conversations with their provider. And then, as mentioned earlier, financial needs are very prevalent. Not knowing what to expect financially is very, very frightening for anyone.

[00:06:33] And it’s especially frightening for somebody who has health, whose health has been compromised. So, again, I can help. Find and then connect patients to local and national resources that the patient may be eligible for and then I can also help that patient complete the necessary forms to apply for those programs.

[00:06:53] Adam Walker: Love that. Alright, so, so you are. supporting breast cancer patients on a daily basis. And so, so as as someone that is not supporting those people on a daily basis, and I think it’s a lot of our listeners probably are unfamiliar with how to best support them. Like what would you, what advice would you give to friends or families of those that are newly diagnosed that just don’t, they don’t know what to say or what they should do?

[00:07:20] Laura Grueser: Absolutely. So my recommendation for friends and family is to rally around your loved one. Don’t be afraid to visit them or to speak to them about their diagnosis. Ask your loved ones how they would like you to help so that you’re respecting their preferences. And by giving them support, that will help them feel loved and cared for and understood.

[00:07:45] And you may also, actually, it helps you feel like you’re helping to do something for them. Breast cancer can change the lives of the ones who are affected by it, and the ones who are around them. So what you may do also is get help on how to talk about tough subjects, because it is very tough. Stay flexible.

[00:08:07] Make adjustments. Deal with the change and stay open and honest with each other about the feelings and needs and expectations

[00:08:18] Adam Walker: And and for for those people that are wired to say they want to do something You know the tangible to help someone like what are some tangible things that you think they might be able to offer?

[00:08:30] Like that would help with support.

[00:08:33] Laura Grueser: Absolutely. There are three main types of support. So you have your informational your emotional and your practical Type of support. And so this type, these types of social support helps to make people feel loved and cared for and understood. And we believe that it will help improve their quality of life.

[00:08:56] So, informational support, the first one, is acquired by learning breast cancer terms. You want to learn the terms, learn about the treatment options, and about how to get help with that information. You can go to the About Cancer section of Komen. org. It has a lot of great informational. support. Then the next one is your emotional support.

[00:09:26] So a diagnosis of breast cancer can bring a wide range of emotions, including shock, fear, denial, sadness, and anger for sure. So as your loved one

goes through this, you can help them cope with that impact of the diagnosis. And sometimes just being there and listening is what really matters. And then the practical support.

[00:09:50] So, this is the more hands on. This is offer to take them to their appointments, babysit the kids, take the kids to and from school or practices, grocery shop, cook dinner for them, and helping them maybe with daily chores around the house, and just sitting with them and talking. So, as an example, I recently had a patient who found herself completely overwhelmed by her diagnosis.

[00:10:16] That’s it. She’s very young. She is single. She has no close family to lean on. So she had to go through scans, tests, surgery, and treatments in addition to all the practical issues of working and paying hospital and household bills. So luckily she reached out to the Cummins Breast Care Helpline and was able to get connected to a navigator.

[00:10:41] I provided emotional support by letting her feel comfortable enough to share her concerns. When I let her know that she was not alone and that I was going to be with her, supporting her through it all, she became emotional and expressed her gratitude. She was crying. So I’ve made it also a priority to send a card to my patient.

[00:11:04] It’s the little things like that that can mean so much to someone going through such a life changing event. I was also able to share information from Komen about her diagnosis. And in turn, she felt more empowered by her newfound knowledge. And this helped take away some of the fears of the unknown.

[00:11:24] These are examples of emotional and informational support. And since we’re remote, sometimes it’s difficult to provide the needed practical support. So that’s when we, as navigators, get creative. There are many home delivered meal programs found in most places and we’re able to make referrals for our patients.

[00:11:44] Sometimes we can tap into housekeeping services and health services and set up, setting up transportation so that the patients can get to and from their appointments is another way that we help break down the barriers of access to care.

[00:12:00] Adam Walker: I love that. And I love that that patient has has you to support them.

[00:12:04] That’s so great. So now on the, you know, you, you mentioned all the things that, we can do to support. On the flip side, like help our listeners understand what they probably should not do, what they should avoid doing.

[00:12:17] Laura Grueser: Oh boy. So the biggest thing that I have found is try not to compare your loved one’s cancer journey to somebody else’s.

[00:12:29] Focus on them, not on others. Also, don’t avoid them. They need you. Don’t stop hugging them. They won’t break. Don’t argue about their treatment path. It may change or it may not. But they still need your support. Provide your opinions and your suggestions if they ask for it.

[00:12:52] Adam Walker: That’s great. I love that. I love, I mean, I love the like, not don’t compare the, the, to the other camp because like, that’s the natural human thing to do.

[00:13:00] Right. It is like, like to, to empathize, like, Oh, my uncle had, or my aunt, or, you know, like, no, no, no, don’t do that. It’s not the same. It’s not the same. It isn’t. It isn’t. And that’s hard to

[00:13:11] Laura Grueser: understand for a lot of people.

[00:13:13] Adam Walker: Yeah, well, I think what’s interesting too is like, I think, you know, if you go back, like back in the 90s, like they kind of lumped all breast cancer is like almost very, it’s all, it’s all breast cancer, right?

[00:13:22] And, but now it’s so nuanced. It’s so different. Treatments are so different. You can’t, one is not at all like the other. And it’s very dangerous to try to try to conflate the two together.

[00:13:32] Laura Grueser: Exactly. And before I came to Komen I, I was of the same mindset, but thank heaven Komen has wonderful teaching and they really prepare us navigators for dealing with breast cancer patients.

[00:13:50] And it just opened up my eyes to the whole realm of, of how big this is.

[00:13:58] Adam Walker: Yeah, so, so big. So so talk a little bit more about the importance of emotional support and, and how you encourage your patients to seek that out.

[00:14:08] Laura Grueser: So emotional support is extremely important. Our navigators provide emotional support and guidance to help address the feelings that come with the challenges of a breast cancer diagnosis.

[00:14:21] Komen also has two private Facebook groups that I always recommend to my patients. There is so much great information and support found on these social platforms. We also can connect patients to local and national support groups. It’s easier than ever to connect now. Zoom and other virtual platforms can be a wonderful tool to be able to reach others who are currently or have gone through many of the same experiences.

[00:14:52] We can research and connect patients with counselors, social workers, and therapists who may be able to help guide patients and provide additional support as well.

[00:15:02] Adam Walker: That’s fantastic. Now what suggestions or tips would you have for a family member that might notice that a loved one is struggling emotionally?

[00:15:11] But they’re not sharing, they’re not engaging, and they’re, they’re kind of withdrawn.

[00:15:18] Laura Grueser: The first thing is to please do your best to be patient with your loved one. They are going through so much. Sometimes they just need to be in the moment to try to sort everything out. This can seem as though they don’t want to engage, and maybe they don’t want to at that point.

[00:15:40] But in your role as a caregiver or co survivor, it’s important to respect their preferences. And to be there for them when they’re ready to talk. So, some of the things you can do is try asking to get the conversation going. You can say, I really want to understand. Can you tell me about it? I am ready to listen when you want to talk.

[00:16:03] Or, how was your doctor visit? Are you concerned? Let’s talk about it. I want to know how you’re feeling, or I’ll never know exactly what you’re feeling, but can we talk about it? I’ll do my best to understand and be here for you. And then you can say, is there anyone else you would like to talk to about your feelings?

[00:16:26] Would you like for me to call them or help get you connected to some more support? And then you can also let them know that they can reach out to our patient care center. If they want to speak with someone for additional support and resources also.

[00:16:42] Adam Walker: I love that. That’s great. Those are all really good examples that I would not have thought of.

[00:16:48] So that’s why we have these conversations. Great. Now, now still thinking about caregivers – can you talk, like, talk about how important is it for caregivers to take care of themselves? while they’re also trying to support their loved one through the diagnosis and treatment process.

[00:17:05] Laura Grueser: Sure.

[00:17:06] So, self care is so very important for the caregiver of a breast cancer patient. You must take care of yourself in order to take care of others, right? It’s a big job sometimes. There should be no guilt, no guilt whatsoever and saying that you need some respite for yourself. That is a healthy thing that’s good for you.

[00:17:28] We encourage that because caregivers also experience fear and worry. And it’s also important for them to acknowledge those feelings and get the support that they need. Again, our website at Komen. org has a list of caregiver and co survivor support groups as well. And we also have other resources that can be helpful.

[00:17:50] Caregivers and co survivors can also reach out to our patient care center for more information or for additional support. Because we not only navigate those who are diagnosed, But we also work with the family members and caregivers as well, knowing how important they are. We have that a lot. A lot of times the caregiver is the one who calls in to our patient care center and begins the conversation.

[00:18:17] So that is really important. And Komen itself, is so good to give us navigators and those of, of us who are in our patient care center. They’re really, really conscientious of self care for us as well. So we are a big, big proponent for self care for the caregivers and the co survivors.

[00:18:44] Adam Walker: You know, I, I’m really glad that you mentioned that because I, I actually forget, honestly, like even in doing these interviews, like I forget that that a patient navigator can help, you know, the caregivers.

[00:18:55] And then a lot of times it’s the family that you’re engaging with first. And because I think my, like your first thought when it comes to medical stuff is like, Oh, the patient has to be the one to call because they’re the patient and it’s medical stuff, you know, but like in this case, like they, the family can engage, which is really important to know.

[00:19:10] Laura Grueser: Absolutely. Absolutely. Just very recently, I started navigating a patient, her, one of her sons called in to the, the helpline and began that conversation. And when I was able to reach out to her she said, well, that I said, it sounds to me like one of your sons called and she said, yes, they are so protective of me.

[00:19:36] And so I, and I told her, I said, those are good boys. Those are good boys. That’s great. You keep

[00:19:41] Adam Walker: them around. That’s, that’s great.

[00:19:42] Laura Grueser: So I love that. I love that. It’s, it’s good. It’s a, this is you know, this affects everyone, like I said before. Mm-Hmm. . And so we’re here for everyone.

[00:19:52] Adam Walker: I love that. I love that.

[00:19:53] All right, so, so last question. Where can our listeners, whether they’re, they’re patients or supporting family or friends where can they find resources to help guide them through this challenging process?

[00:20:07] Laura Grueser: Please, please, everybody who is listening and is interested in this. Listeners can visit our website at www.

[00:20:16] common. org. Our website is filled with evidence based information and has many, many educational and practical resources. If you or a friend or a loved one is in need, please contact our Breast Care Helpline at 1 877 465 6636 or you can email us at helpline at To get connected to a navigator.

[00:20:47] Adam Walker: That’s fantastic. Well, Laura thank you for the work that you do, for the impact that you’re having on, on people and on families and on communities. And just for the, the compassion and for that sunshine that you are, I so appreciate and thank you for joining us on the show today.

[00:21:03] Laura Grueser: Thank you so much. It was a pleasure to be here.

[00:21:11] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit realpink. komen. org. For more on breast cancer, visit komen. org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam. You can find me on Twitter @AJWalker or my blog,