Stepping into the medical system after a breast cancer diagnosis is like a baby taking its first breath outside the womb. 

It’s a shocking, unfamiliar environment that most of us have no idea what we’ll be expected to navigate.

Yet we also expect that our oncologist will take care of everything we need. 

In my own breast cancer experience I found that this expectation led to a tremendous amount of anger and frustration. 

At times I thought I just got stuck with a bad doctor. Then I started coaching other women and heard the same story and saw the same anger over and over. 

In this episode, I’ll offer you a perspective on the standard of care that can lead you to have a much more empowered, supportive experience and relieve you of the long-term suffering that anger and resentment add to an already difficult experience. 

Referred to in this episode: 

Work with Laura 

Books: 

Mind Over Medicine 
 

Follow me on Social Media: 

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 Read the full transcript below: 

Laura Lummer 0:00
You're listening to better than before breast cancer with the breast cancer recovery coach. I'm your host, Laura Lummer. I'm a certified life coach, and I'm a breast cancer thriver. In this podcast, I will give you the skills and the insights and the tools to move past the emotional and physical trauma of a breast cancer diagnosis. If you're looking for a way to create a life, that's even better than before breast cancer, you've come to the right place. Let's get started. Hey, friends, welcome to episode 329. I'm your host, Laura Lummer. And I'm thrilled that you're here with me today. One more thing before we jump into the show that I want to state because I've had multiple questions about this, just in the past week, what I do what I put out in the world, it's important to me that people who've heard the words you have breast cancer know that there's some place they can go and get support like this podcast, or like the coaching programs that I do. My one of my coaching programs is the better than before breast cancer life coaching membership. And I want you to know that that membership is always open. There are a lot of times people offer membership programs, and they open and close them. And that's to kind of drive that sense of urgency like, hey, it's only open for this long and you got to get in or the doors closed for X amount of time, you'll see that in a lot of memberships. But I don't do that. Because I don't want anyone who has heard those words, you have breast cancer, to look for support, find me and then get a closed door. So maybe that's not driving membership, like the way that people teach coaches who have memberships to drive it. But I don't care. Because what's important to me is that there is support available to you, for you when you need the support. And so the better than before breast cancer membership is always open year round, you can join it anytime. And I know that another reason people open and close is because so many times we tell ourselves, I'll do it later, I'll do it later. We know we need something now. But we just don't. We're not tuned in so much to our sense of worthiness to our sense of deserving the support that we know we need. And so we put it off, because usually we give priority to somebody else or something else ahead of that. So I just since I've had several questions about it, and it kind of surprised me, because I just kind of thought that that was common knowledge that if you follow this show, or if you know about me that you knew the better than before breast cancer membership was out there and that it was available to you. So since it's come to my attention that that's not common knowledge, I wanted to just talk about it before we get into the show today. So it is a group coaching membership. There are private sessions in it are also discounts on additional private sessions. So you do and I do offer private coaching as well. So go to my website, the breast cancer recovery coach.com. And you can get all the information, just click up at the top where it says coaching programs. All right. Let's jump into this. Today I want to talk to you about something that comes up a lot. It was a big part of what I had to deal with and work through after my first diagnosis. It is a perspective. And I think it has to do with managing our expectations. So most of us don't have a lot of exposure to the standard of care world, which means standard of care. I'm sure you've heard that term, if you've had a breast cancer diagnosis, standard of care is we just go to Western medicine, we go to doctors, hospitals, and they have a protocol, they have the standard of care. Because we're not really exposed to that until something happens either to us or someone that we love. And suddenly we're in the system, we'll call it the system, we're in this system. And then we really start to see how well how much benefit the system can offer because it can save our lives and how broken the system is because a lot of stuff falls through the cracks. Because unfortunately, doctors don't always get to practice the way they want to practice because they have to follow rules set by HMOs and BPOS. Right different insurance companies. And so when we get into the standard of care, I think we were outside of it. We think MRI, CT scans, PET scans, all this imaging ultrasounds we think that that's the be all in the end, all that these things are great and these things work perfectly. And then we get into the system, and we realize that they don't. And let me just state right up front. This is not a show bashing standard of care. This is not to speak negatively of standard of care. I just want you to have an understanding of what I'm referring to because what we're going to talk about today is our expectations Why we have them, and how those expectations can create a lot of suffering for us. And I'm going to offer you some tips and some insights on what I've learned that might be able to help you with that. So let me give you the definition of standard of care. I think that putting standard of care into context will help as I go forward with the show. So the standard of care in health care context refers to the level and type of care that a reasonably competent and skilled health care professional with a similar background and in the same medical community would have provided under the same or similar circumstances. A represents a benchmark for measuring the adequacy of health care services provided to a patient, and is often used in legal context, to assess whether medical professionals have met their duty in providing care to patients. This standard of care can vary depending on various factors, including medical condition being treated the patient's history and age, and the specific circumstances of the case, in legal disputes, particularly in cases of medical malpractice. The standard of care is a critical component in determining whether a health care providers actions or omissions constitute negligence. I wanted to share that with you because I just stated a minute ago, doctors don't always have a lot of freedom to practice in the way that they might want to practice, there's a standard of care. And so we have to realize that there is a limitation, right there are boundaries with in which this medical system functions, and that doctors function within and I don't mean that to sound negative, or like I'm bashing it, I'm just I want to just be factual about it. I'll refer to myself in my own story. In my very first diagnosis, I just wanted to get to an oncologist, I found out that I had cancer and I was like, just give me to an oncologist get someone to get this out of me and save my life. That's all I wanted. Then I got into the system, then I started learning that things just weren't as cut and dry as I expected they would be, especially with someone who had a life threatening illness. And for me the weight and for many people that I coach, and that I know, the wait time alone, from the time you're diagnosed to the time you get into see a doctor, right, it can be so upsetting, because it's our life hanging in the balance. So if we get a diagnosis, like we want to be in care, like 10 minutes, right, we don't want to wait. But we do wait. And it is okay. In many instances, most of the time when someone is diagnosed, it's in earlier stages. Thank God these days, we're catching it early and earlier. And so, you know, doctors know things we don't know, right? All we know is I have cancer in me, cancer can kill me, get it out of me, give me some help, give me some care. So right off the bat, we can start going in with this expectation, like I should be getting treated with urgency here. Because because it's our life, and it's important to us. So of course, you're gonna have that expectation. Then we get into this system, when we realize that these physicians who I truly believe, are there to save lives, these visits, my oncologist works his butt off, like I don't even know how this man has a life. He's so committed. And he's so caring. And he's just an excellent doctor. And he's got a great practice. He's very organized. But still, there are other moving pieces, right? There are times when things fall through the cracks, or there's not a lot of time to spend together. I think, again, we don't expect that when we go into the system with a cancer diagnosis. It's very urgent for us as the cancer patient. So I'm talking about this because I coach a lot of women who are in various stages of anger over what's happening in the medical system.

And I want to help you put into perspective because I think if we can put it into perspective, then we can manage those emotions a little bit better. And take the energy that we're putting into those emotions into something that serves us better. Because the emotions that are any variation of anger, irritation, frustration, annoyance, agitation, rage, fury, resentment, indignation, exasperation, hostility, all of these things that we may experience have an impact on us. And they're all variations of anger, right? Anger is the root emotion. And when we have something that's so important to us, like our life, and we don't feel that it's being treated, or all the details are being looked over, we can easily slip into these variations of anger. And when we do it's too easy for our brain to get caught up in them. So let me just share a couple of examples of what I'm speaking of. For instance, doctors know what they're doing. Right. So they see a case, there's a standard of care. They believe that patient needs a medication, they call him that medication, they say, go pick up this medication, they are taking someone into chemotherapy, their standard of care is maybe give hydration, give steroids, give chemo, give chemo at different times, whatever, right? There's different standards, there's different protocols. But that's what they know. And that's what they believe is the best treatment for their patient. So they're just in the habit of doing this, like, this is what we do. So here, and but then we're on the other end as the patient not knowing anything about this, right? Just being scared and going and going, what the hell is happening, especially if it's your first diagnosis, and you don't know what questions to ask. And you hear all these things just being kind of thrown out, you right? Go do this, go here, take this, take that. And then sometimes you take these things, and you don't feel good. Or oftentimes, you feel powerless. This is a big part of breast cancer treatment, this experience. And I think it's a big part of the trauma, we go through the feeling of powerlessness, because we don't know what to expect. We don't understand what we're being told to do. A lot of the times, there are those people out there who are like amazing researchers and look into every single thing. But some people are so overwhelmed, and so frightened, that that's not even something they have the capacity to do when they're in treatment. And for others. Sometimes I see, we go so deep into the research into all the bad things that could be happening and all the terrible things that are medication, that then there's more overwhelm of what am I doing here and what is happening to me, and it just compounds, these feelings of powerlessness, and all the variations of anger. And I want you to stop and ask yourself, when you feel powerless. When you feel any of the anger emotions that I just listed? Where do you feel it in your body? Because I know you feel it. You're not gonna go through some of those emotions I just listed and not feel that in your body. For me, when I feel those emotions, when I feel that anger, it's in my chest, it's in my throat. What is that telling me? It's telling me this emotion, this emotion based on the thought I'm having? I think you should ask me before you call medications inform me, you should inform me of everything that's in this before you give it to me. When I have those thoughts. And I don't get the result that I expect. Then I attach that emotion to it whether it's anger, frustration, powerlessness, anything else, irritation, annoyance, and it's understandable. It's understandable why we do that. And it's common. It's, I don't know, I don't know if I know anybody who hasn't experienced this in one way or another. In fact, I'll share an experience that happened to me after my first diagnosis. So they did the pathology on the tumor. And they were trying to determine if it was hormone positive, it was a her to positive tumor what was going on. And the her two tests came back, unequivocal, they couldn't decide if it was positive or not. So they tested another sample of the tumor, and it came back positive. So my doctor didn't feel confident. So he ran a third test. And the third test said no, so I had a we don't know. Yes, it is. And no, it isn't. And of course, these are different slices of the tumor being tested. So I took it all I went and I got a second opinion. And then second opinion, is a very well known doctor in the breast cancer field. And he said, If you were my patient, I would be giving you treatment for her to positive based on these results. So I took that back to my oncologist. And in accordance with the definition of standard of care that I just gave you. There's a lot of legal liability on these doctors. And I think we can all understand from we can look at it from two perspectives. A doctor has a legal obligation to the standard of care. But they're also obligated to us, right? And we want what we want in the best way. So it's it's a sticky situation sometimes. And when I brought this back to my oncologist, he said, I can't do that, because this test said no. And if I give you the treatment for her too, and it causes you damage to the heart, which is one of the potential side effects. You could sue me, these are the words from my oncologist, you could sue me. And so I said, then give me a waiver. And I'll promise not to sue you like, this is my life. But it is also his life, right? It's his financial life. Man is a doctor how many years and how many hundreds of 1000s of dollars did he spend to become an oncologist? So he's a human. He has fear he's protecting his livelihood, his family, his safety, his reputation on the human eye. I have cancer, I don't know what the hell the protocols are. So I want what I think is safe for me, right? So we get into these situations. And this is just one example. I know, if you're listening to this, there's many, many, many examples of this type of thing where we come up against a standard of care, and it doesn't meet our expectation. And then, if we let our brain run with that, and we get stuck in the stories about it, we create a tremendous amount of suffering for ourselves. So what do you do? Do you not expect to have good care? No 100% would never, ever say something like that. The whole purpose of me just talking about this is to talk through all of the perspectives, right to be able to look at this from multiple sides, so that you understand something, the need for advocacy, right, the need for either you, or someone you trust, to advocate for you, to be there for you. And to realize that our care is something we have to be responsible for. Even if we don't know how to be responsible for afraid we're confused. If we don't understand, it's so important to reach out and say, I don't get it. Who does? Do you guys have a social worker on your team, many hospitals, and many oncology facilities have social workers and patient advocates. But I don't think that a lot of patients are aware of that, or that they reach out to them. There, again, this mentality of we should be able to do everything ourselves comes into play all too often. Don't do it yourself, please, when you have a diagnosis of cancer, don't do it alone. Even if you are someone who is a researcher and you need the information for yourself, we also have to recognize when we hit that spot where it's too much information, and now it's gone from helping me make an informed decision to stressing me the hell out and now I'm in a spin of overwhelm. So we've got to understand our own needs, our own expectations, and our own boundaries. And I've been in this medical system now since 2011. And I've dealt, I don't even know how many women I've coached who've been in this system. So I've seen a lot, and I've heard a lot of stories, and I've experienced a lot of stories. So the reason I'm talking about it is to say, let's see the medical system for what it is. Because when we do that, then we are in more of a position of power to manage our care. If we're only going to expect it to be what we think it should be, then we put ourselves in a place of powerlessness and limit ourselves to who can be on the team. Right? If you think that the one player is the only player, then you don't look any further and say what other support might I need here. And there might be really big gaps. And then because of those gaps, and your expectation that those gaps shouldn't exist, you end up with a lot of really disturbing emotions that are impacting your body that are stressing you out that are spiking your cortisol levels, and that spikes your blood sugar. And we've got the stress reaction going on inside our body, which can be exhausting and debilitating. So, we're so fortunate to have a system to support us in the way that it does. But we also have to be aware that there's a lot of holes in that system. And that's, again, not to bash it, but to say when we're aware of it, we can ask ourselves the question, what do I need to be able to navigate this in a way that suits me? One offer is making sure that you or someone you trust can advocate for you will do the research or read the articles. Like if you think I don't want to know this stuff, I don't I don't care about this stuff. It is too overwhelming. It's too stressful. Then find someone who can do it and ask the questions for you which you are able to give that power to people and let them know too. I don't want to know, right? It's too much for me to manage. I'm trying to manage my emotions around this diagnosis and treatment. So I don't want to have to manage more information and research perfectly okay. You can give people the power to ask questions. And then you can also realize that where those gaps are other people that still might be covered by your insurance and might be part of working in that medical system, like integrative practitioners or many hospitals now, integrative nutritionist social workers, as I mentioned a moment ago, patient advocates, nurse navigators, there are lots of roles that exist in the medical setting. systems that are there to support the patient. But if you don't know about them, then you can't access them. And from again, my own experience and that of so many clients that I have, that feeling of powerlessness and of being lost in the system, can really take you down that dark hole of unworthiness, worthlessness and importance and what when you think of those types of feelings, what emotion sparks in you, when you think these people are treating me like I'm worthless, these people are treating me like I'm a number, that doesn't feel good. So it's important for us to realize that the medical system is structured in such a way where it's very easy to not be heard, where it's very easy to fall into being treated like a number, because there's so busy, so many patients, and so little time to see them all. So that it is easy to fall into that if you're not able to speak up for yourself. And if you don't have somebody that can do that for you. And anytime anyone is in a career for a long time, or a practice of some kind, they know what they're doing. They know what the right thing is, they've done it for so long that some things just come to them naturally, it's just become mechanical. And you being on the other side, don't want that. Right, you want to be nurtured. And you want to be informed, and you want to be aware, and you want to have the power to have choices, and make decisions. And if you go into the system, thinking that that's just going to happen automatically, you're going to be disappointed. And you may end up adding on to the trauma of the diagnosis was more really powerful negative emotions. And I wanted to talk about because I see so many clients who are in treatment or trying to recover. And they need so much attention to go into self care and into self compassion, and into what they can do to take care of themselves. But their energy is being spent on the things that didn't meet their expectation and the anger that they're feeling towards that. And we only have so much energy to go round, we have to make some really tough decisions. When we're going through treatment, when we're recovering after treatment, because cancer just doesn't stop. I mean, cancer treatment just doesn't stop, right. You don't get out of chemotherapy and surgeries, it just stops. It's a part of your life that needs management ongoing, whether it scans and bloodwork or nutrition or processing trauma, or processing, learning how to live with fear. It isn't just done. And I think that's another expectation. Nobody really tells you about right? You think just like anything else, you go through it, you get done, you're done, you move on. And this is part of the trauma, when you realize, Wow, this is actually going to be a part of my life and needs a management for quite a long time. So I think knowing and being very honest about what the standard of care system is, and what you can expect from it puts you in a position where you know, there are more questions to ask, where you have the option to bring more players onto your team to support you in all the ways you need to be supported. You know, so often, I hear people talk to me about nutrition, and they're just so frustrated because their doctor didn't tell them, they shouldn't eat this, or they should eat that or they shouldn't do this, or they should do that. But that's not the role of an oncologist. Right? an oncologist role is to use the medications they're trained in to destroy cancer cells. And that's what they do. So, again, this is so important to just know the truth about what we're dealing with. And if managing nutrition and creating a supportive nutrition program is important to you, as you go through cancer treatment, then it's great to know the facts and say okay, that's not what an oncologist does. That's not what they're trained in. So let me ask for references to someone else at this hospital. Can they bring in a dietitian? Can they refer me to a dietitian? What can you do? What about exercise? oncologists are not personal trainers, they're not cancer exercise specialists? Is there someone that they can refer you to, to help you understand how you can move your body to get the best outcomes possible, while controlling for limitations that you may be experiencing because of treatment? There's so many different factors and so many different roles. And I know it took me a long time to make peace with that. It took me a long time before for some reason the light bulb came on and it snapped into place one day and I just went oh, I don't have to be upset anymore about this doctor, because that's not this doctor's role. Now, there are some things in standard of care and some ways that we get treated that I think doctors don't even realize because they do have so much responsibility put on them. And they are so busy in their practices and with all the things that are involved in their practices. So there was a book that I read, I think the author is Lisa Rankin, I look for it. And I'll link to it in the show notes for this episode. And she is a physician. And she talks in this book about how devastated she was at one point where she got a what I don't know if it was a phone call, or a voicemail or an email, I don't recall. But a patient that she was dealing with that said she was not going to work with her anymore. And she says, because I'm not heard. And she had said to her, you know, the last time we met, you never even took your hand off the doorknob while we were talking. And this patient felt very slighted, like I'm not important to you, you're not hearing me, you're just coming in for the minimal amount of time and heading out the door. And when this doctor heard about it, it was really a monumental an eye opening moment for her. And she started to do some soul searching on how she wanted to practice medicine, I think it's a really cool book to read. Because it does help you see things through a different lens, and how doctors who have dedicated so much time, energy and money into doing something that they're committed to because they want to serve and help other people. But then they also get in the system. And there are blind spots and things that they don't see. So it was a really interesting book Plus, she also offers a lot of insights into like natural healing and you know, connecting to yourself and stuff, it was a good book. But I just hope that being able to put some of this into perspective helps you to let go of some of the negativity that can be stored in us. Because the fighting the battling the anger, the frustration, the irritation, the annoyance, the believes that they should have seen this, and they should have seen that. And they should have known this, not that it isn't true. Not that it's not okay for you to have that expectation of really top notch care, I think you absolutely get to have that expectation, I have that expectation. But sometimes if you want to get that expectation met, it takes more than just one primary player on your team. And it takes you standing up for yourself and being able to express what your needs are, and what the treatment is that you expect. You know, I have one client who I just love, she's gonna know who she is when I say this, but she's just a ballbuster, you know, and she didn't get treated the way she wanted to get treated, and she took it up the chain of command and let people know this is not okay. You can't treat me like this. And if you're treating me like this, you're treating other patients like this. And you need to be aware it's happening. And I just love the way that she approached it. Because this is taking something that can be internalized as a lot of anger and turning it into something positive. That not only changed the way that she's viewed by her doctors, but hopefully changed her doctors perspectives of how they were addressing other patients. Right. So knowing what we're walking into, and being willing to see what it is for what it is, I think has multiple benefits for us in the deciding on how we want to put together our own care team and be advocated for or advocate for ourselves and spare ourselves a tremendous amount of anger and frustration, because you deserve that precious energy to go into something that serves you. And as I started saying earlier, when you think about that anger and where you feel it in your body, you know that that doesn't feel good. So how do we honor our highest standards for ourselves, which includes treating ourselves well, and seeing things for what they are so we can let go of negative emotions and create space for better self care. I would love to hear your thoughts on this. I would love to hear your feedback on this. You can find me as the breast cancer recovery coach on Instagram and Facebook. You can join me in my better than before breast cancer life coaching, membership or private coaching sessions if you need support. And I also have a free community on Facebook, the breast cancer recovery group where you can join it's a community of a lot of women who have been through this experience of breast cancer and are there to create lives that truly are better than before breast cancer and support others in doing it as well. You can find that on Facebook with the search the breast cancer recovery group. All right. I hope that that's helped you in some way to let go of a little bit of stress and create a little more space to live on yourself. Alright friends, take care. I'll talk to you soon. Soon in your head, you've put your courage to the test laid all your doubts your mind is clearer than before your hardest phone wanting more your futures Give it all you know you've been waiting on