There’s no other word to describe the feeling when you or someone you love is diagnosed with cancer. On any given day, you might rotate between feelings of disbelief, anger, and grief. You may even feel like you’ve lost control over your own life.
While your diagnosis might raise any number of negative feelings, here's the good news: you don’t have to feel lost or confused. In Cancer: The Journey from Diagnosis to Empowerment, Dr. Paul Anderson clearly outlines what you can expect throughout your cancer journey. More importantly, he demonstrates how to cultivate a mental outlook that will help you reach your best outcome. When it comes to healing, mind does matter.
Drawing on decades of experience, Dr. Anderson offers practical advice to demystify the healing process, empower patients, and teach loved ones how to provide effective support.
♡ RESOURCES MENTIONED
⟡ Cancer: The Journey From Diagnosis to Empowerment: https://amzn.to/2NrybmM
♡ QUOTES WE LOVE
⟡ “Be as healed as you can be”
Transcription:
Laura Carfang 00:03
Hello and welcome to breast cancer conversations podcast brought to you by surviving breast cancer dashboard. I am Laura Carfang, breast cancer survivor and founder of surviving breast cancer dashboard, a nonprofit organization providing community education and resources to empower those diagnosed with breast cancer and their caregivers from day one and beyond. Hello, everybody, and welcome back to breast cancer conversations. It is so nice to be speaking with all of you today. If this is your first time tuning in, welcome. It's so nice to have you here. Please be sure to subscribe. We release our podcast once a week, usually on Mondays so you can always have something to look forward to as we begin our week together. Before we jump into today's conversation, I just want to give a quick shout out to all of the great amazing resources we have on our website surviving breast cancer.org. I got some feedback actually, that some of our listeners don't know about all of the amazing events that we have every week, every month, etc. So I want to make sure that you guys are aware. Every Thursday night, we host our Thursday Night Thrivers virtual meetup. It is our aka support group. But it's really anything but a support group. It's kind of like chill time to hang out at 7pm. Eastern, everyone is always welcome. I also kind of coin it our no agenda meetup because we talk about anything that comes to mind. Sure, breast cancer, but also anything else that we're going through in life, it's just a really nice time to hang out, chill and catch up. So if you want more information on that, you can visit us at our website surviving breast cancer.org forward slash events. You will also find on that website more information on all of the amazing webinars we have coming up our Sunday NBC series where we host webinars every other Sunday, plus our monthly book club where we read books that have nothing to do with cancer as well. So as we build this community, there are just so many ways to get involved. And speaking of books, I am excited to announce today's podcast topic where we are going to be speaking with Dr. Paul Anderson, who is the author of cancer, the journey from diagnosis to empowerment. As we know, there's no other words to describe the feeling when you or someone you love is diagnosed with cancer. On any given day, you might rotate between feelings of disbelief, anger or grief. You may even feel like you've lost control over your own life. We've all been there. While your diagnosis might raise a number of negative feelings, there's good news, you don't have to feel lost or confused. In Dr. Paul Anderson's book, he clearly outlines what you can expect throughout your cancer journey. More importantly, he demonstrates how to cultivate a mental outlook that will help you reach your best outcome. When it comes to healing. Mine does matter. Drawing on decades of experience, Dr. Anderson offers practical advice to demystify the healing process, empower patients, and teach loved ones how to provide effective support. Welcome to the conversation.
Dr. Paul Anderson 02:57
I've been around medicine a long time. So I started in the laboratory end of things in 1976, actually, so it's been doing this a while, went back finished medical schools A long time ago. And what happened really just the very short version of the story is when I started practice, I really wanted to be a general practitioner, which is what I was. But I was also very interested in a lot of integrative medicine topics and palliative care things. So what started to happen almost right away when I opened was people realize that I was doing certain types of therapies that other doctors in the neighborhood weren't. And so we started getting a lot of cancer patients. So it really it didn't start out that I thought cancer would be the focus etc. But that's really very rapidly what happened very sick people with not with the chronic illness and cancer. And that really grew into you know, if you go back, say 25 years or more there, the idea of palliative oncology was almost non existent. The idea of integrative oncology was almost non existent. I mean, it was really, we, we were all learning a lot. But people needed help. So that's really where it started. And from there, there was a good part of 20 years where I did that a lot. I also have always taught I teach physicians as a large part of what I do now. And mentor doctors and so I was really involved in trying to, you know, move that part of medicine forward. And in and amongst all of that in about 2000. Let's just for sake of argument, say eight or nine you mentioned that I ah I had a university post where I was full time professor in a medical school and we I had a NIH funded study we were doing. And it was a collaborative between my university in the Seattle Cancer Care Alliance, which is University of Washington and Children's Hospital and Fred Hutchinson, and you know, some very big players. And what it started was I didn't start with study, but I joined it right away. And it was if we took people who had largely breast cancer, but there were a lot of other cancers as well, from this large, collaborative, those who wanted to do integrative therapies and palliative therapies, this stuff I've been doing, what if we track them, and then match them to people same age who did standard therapies, and so everyone did standard therapies, but we had good add ons. After five years, would we see better quality of life or survival, etc. And so we did that for five years, what got me involved was the study had an interventional part, that they couldn't start until they had somebody who had done that before. And that's what I was doing, the intravenous therapies and all of these other interventional things. So I was part of that for the five years, and I almost thought we got funded because they didn't think it would make a difference. And at the end, we actually got some very positive note that our patients did actually live longer, you know, compared to age matched, and it spawned another study that looks a lot at quality of life and some other things that are going on. So I've had a not planning at all, but I've had a very rich background with cancer patients. And so what really happened as far as writing about cancer, I've always written because I'm a teacher. But right after the study, I started to publicize some of the things that we had done, because if you've ever looked at studies, there may be parts of the studies that no one ever publishes, because there's so many things you discover, you didn't realize. So I went and started teaching. Well, I was doing that. And a doctor I hadn't seen in 25 years, who went to medical school together, came up to me at a conference and said, You should really tell this story. And you, he says, you have a hard time getting a publishing deal, though, because you're, you know, no one knows you except in the academic world. And he says, but I can get you a publishing deal. So we wrote a book together that was predates this book, which was really a lot about those other things, sort of the, you know, what I would call the what happens to you with cancer and what what are choices to make that are better and worse in the, you know, integrative space, etc. When we were done with that books, in many languages around the world, it's been very popular call outside the box cancer therapies. But we were done. I was mentoring my clinic and my doctors, and one of the things that I I felt like we did a great job with the, what do you do with cancer as far as your body goes, but what we kept I kept running into was, we talked a little about the mind body connection, and just the logistics of, oh, what do I do with this diagnosis, I didn't want it I you know, what I do with my family, what I do with, you know, everything. So the more I worked on that with my own doctors and mentored people, the more I thought, you know, agnostic of how you're treating cancer, what you're doing about your cancer, the internal part that you go through, and your closest loved ones go through and you get diagnosed, is so critically important. So that led to this book, cancer, the journey from diagnosis to empowerment, literally the point, it's, um, I designed it to be easy to read, not super heavy and academic was the first time I ever wrote something like that. But honestly, it was it. This, I mean, there is some research and some data and things that I, you know, looked at or whatever. But really, this came from just my day to day experience over those three decades. And looking people in the eye, getting diagnosis and walking them through that. So the point really, is, there is a way to go from the shock and whatever emotions go on that you feel to a place where you are more, you know, empowered, self-actualized, whatever you want to call that. But it doesn't happen automatically for most people. So that's, that's the short version of all those years.
Laura Carfang 09:30
No, that's wonderful, such a rich introduction as well. And a, you know, decades of experience, which I'm so excited to have our listeners kind of take us on this journey, right from diagnosis to empowerment. I feel like anecdotally we speak about that a lot in our like support groups and our blogs and the work that we do, because we know that we anecdotally it makes us feel better, right when we exercise we feel better when we take time to focus on the breath and the mind body connection that you're talking to About, we know it helps, but we don't always know why it helps. And I would like to take a step back quickly to just so we can define terms for people who might who might not be aware when we talk about kind of like the traditional therapies, I think you're referring to like the surgery, the radiation and the chemotherapy. Whereas integrative care, which I think is a nice segue from what used to be referred to as alternative medicine, where it's no longer alternative, it's how can we put these therapies together? And really integrate them so that the quality of life and you know, is there for the person going through the treatment? Do I have that correct?
Dr. Paul Anderson 10:34
Very much. Yes. Yeah. Excellent. It doesn't always work out that way. But that's the goal. Yeah. Exactly. Exactly.
Laura Carfang 10:43
And I know when I was going through my own personal treatment to a lot of these integrative therapies were recommended to me, such as acupuncture to help with some of the side effects that I was going through. And, you know, it's, I think, just a mindset also. So what I love about your book, is that right from the beginning, you kind of paint this picture of the shock and the devastation that comes with a cancer diagnosis, and then how mentally we can start making this shift. And you kind of talk about two different characters in your book and kind of the diversion that these two characters take. Can you tell me a little bit about these personas?
Dr. Paul Anderson 11:20
Yes. So there's, there's two characters that you get to meet Well, you get to meet some other people later, but Bob, and GM, and they're actually real people, obviously, it's not their names, and I change details, so no one knows who they are. But they're very real people. And that was a big part of the motivation to write the book, other than what I was seeing just with patients, and there was sort of a hole here in that space. But the the publishers in I came up with the idea of, could I tell two stories. And the publisher really encouraged that, because the rest of the book is useful from a technical point of view of Gee, I'm stuck and I'm angry, well, you know, where do I go or I, you know, I can't get my family on board or whatever it is. The stories really are there to give the two counterpoints two ways you deal with the, you know, that trip from being diagnosis, to either not empowered or being empowered. So each one of them embodies that. And it's real stories. It's a, you know, everything a book is very real, from real experience. So the point of that, though, is sometimes we you know, sometimes we learn from data and bulleted points, and there's that and sometimes just learned from stories, stories are wonderful. And my, the first thing I was like to say is I don't, I don't judge either point of view, I, of course, you never want a patient to become angry and stuck, and, you know, self-sabotage, but you know, one of them did. So it didn't make me happy that they did, but that's, that's the person's choice, everything's your choice. But if you want to do something other than that, you know, there is a trajectory. So those two stories really are, we see a lot of ourselves in them in different places, and the stories, you know, each, each chapter sort of as the technical parts of where to go, the story kind of unfolds in that, you know, in that order and direction. So yes, it's there to add some humanity to, you know, what otherwise could be a little technical book
Laura Carfang 13:25
Absolutely. And I think sometimes we forget that our own diagnosis extends just beyond the self, that it impacts our families, our friends, and I use the term like we all the time, like we have cancer, we are going through cancer, we are going through treatment, because as I think you point out in the book is there's this grieving process, that we're all on a different journey in terms of those, like anger phase denial, phase acceptance, phase etcetera, but then our family and loved ones might be on a different path also. And so how do we deal with these different personalities or, you know, my experience, I love my mom to death, she's a nurse, and she, when I was going through breast cancer, she wanted to be the nurse. And I really had to turn to her and say, No, I need you to be my mom right now. And that was a challenging and hard conversation to have. But you know, I think you talk about that also in your book in terms of the role the family plays, and the grieving process too.
Dr. Paul Anderson 14:22
Sometimes it's the patient with cancer, who is the one really struggling and may be stuck in, you know, denial or whatever stage of grief. And I did use those stages of grief, you know, to it's a framework we're all familiar with, usually and it is actually the order that people kind of process cancer diagnosis into but the other side of it though, is you can actually be doing pretty good as the patient but you have to understand and it's not your responsibility, but the people around you who love you and are close to you are just as shocked and just don't know what to do and they might be angry or they might have You know, what happens a lot like with your mother, as a nurse or any, you know, any medical person, their default is if I do something for you, medically as a nurse, or if I'm your doctor, I'm doing something to help you. And really, it's harder sometimes to take that roll off and just be the loved one, you know, the parent, the spouse, the partner, whatever. And that's really, we talked about that, in the book, those discussions of Look, this is, it's great, you want to do that, but this is what I need from you, you know, I need this primary relationship we have, and it's so important. And a lot of times, and I saw this, you know, weekly with with patient families, some, it's just like, it works out, and everyone sort of sorts out where they're at, and they get over, you know, the place they were stuck. But sometimes you really have these two divergent things, especially with like partners or spouses. And that's not a healthy, like, none of you the point of the book is, if we move more towards being empowered, in our small circle, including the patient, our outcomes are better, it's, you know, it's not great to have cancer, but it's, it's a more doable thing, and you actually get better outcomes when you do have that. So the fact your close circle is, is so huge. And, and they're going through it a different way. You know, what I usually remind people is when you hear that you have cancer, it activates your your fight or flight system, and it activates, you know, your partner's fight or flight system, but what that connects to is two different worlds, you know, they may have seen some, you know, very bad outcome with cancer had a primary, you know, loved one or relative go through something that they thought I'd never ever want to see that my life, well, then you hear, well, my wife has cancer, it's, it takes them there, then take him to some logical place. So there's a lot to, you know, it's not easy, but it's really worth it. And it's really worth it at least to get the people closest to you on board.
Laura Carfang 17:09
I think you were hitting on some key points about you know, empowerment, how can the patient feel empowered to have those conversations with people to say, this is what serves me now, this is what's helpful to me and what's not helpful to me, I think a lot of times, you know, it's easy to just kind of harbor some of those emotions. And, and that really makes sense of it. And, and to feel that it's okay to disagree with someone, if it doesn't help you. What I love about your book is that you immediately say like, it's okay to be selfish Now is the time to put yourself first and yourself and your health are the only things that matter. Everything else is secondary. And I think just reading that was like, like, yes, like, I'm ready to go take on the world, like, I matter, I'm important. And I can say, like, yes to what I need, and whether that's a nap or whether that's a walk, you know, I sometimes feel like having those words and reading them, give us give us the permission to say that it's okay, it's your allowing us that permission just to be okay, on those good days. And to not be okay, on those bad days,
Dr. Paul Anderson 18:10
As you well know, it's, most people are not socialized to a place where it's okay to, you know, be the center of what needs to happen. And, and that becomes a real, you know, stumbling block for a lot of people, which is why, you know, almost every, if not every chapter where there's sort of, you know, you can get stuck here and move on. The first thing I say is, it's okay to be that way. It's okay to be sad, it's okay to be angry, it's okay, whatever. The point is, that's a place in time and you want to move from there. But the other thing is, it's, it's more than okay for you to take care of yourself and say, whatever it is, you know, I, I can't do this activity anymore, I need to focus on this or I need time, so I can take care of my body or whatever it is. And most people just don't have that internal, the message they hear back is well, you should think about other people or you know, something like that. And, and, you know, we shouldn't think about other people but you, you are engaged with, you know, a process that's not got your best interests at heart. So you have to have your best interests at heart. Yeah.
Laura Carfang 19:24
And you definitely make that connection between like the emotional piece, those thoughts we tell ourselves in our head, and the impact that it has on our outcome and diagnosis. A lot of the conversations that I have in some of my circles most recently, I am four years out from my original diagnosis, and I am still healing I am still now trying to let go of the pre cancer me work on the current version of me. And also trying to be gentle and practice that self care piece because there's still a lot of things that I can't do. And just last night in one of our support groups that we have Every Thursday night, we were talking about, like, we can't go, we can't ever go back, just like the grieving process, right? Like, we can't be in that hole of, Oh, I wish I could have done should have done, you know, used to be able to do. But look at all the amazing things now that I can do, because I've come out on this other side, whether it's, you know, I no longer practice the vigorous yoga I used to do, it's more of like a slow meditative practice and, and coming to terms with that, I would love to hear your opinion on kind of like the self care and the self healing piece. And what you say to someone who still may be a little bit stuck in, in that like, sad world of like, How did this happen to me, but I want to come out of it, how can I take better care of myself,
Dr. Paul Anderson 20:42
And that's where the rubber meets the road really, for most people. The first thing, you know, that I think is most important with that discussion is allowing the person time to get to that place where they actually say it. Because if if some outside person just tells you, you know, look, you you need to stop thinking about the past, and you needed to do some self care or whatever. Sometimes people need that maybe to move off the dime. But really, that has to come from within. And I think the most important thing is it's not. It's the extremely rare human who wakes up one morning and says, Okay, today, I'm all about self care. And I'm going to forget about the pre cancer me, most people, it's just, I've come to realization, I want to go there, I have no idea how to do it. So I'm willing, but I'm, you know, unaware. That's the moment at which then, you know, the whoever is helping, whether it's a medical person, or family or therapist or whatever, or support group. That's the point at which you provide resources that are the next steps. And I think the most important thing is not overwhelming people. Because you can come to realization, you know, for people who don't have cancer, it's, sometimes they'll come to realization, I need to take better care of myself and exercise. Well, if you suddenly give them you know, a 400 point exercise plan, and they've never exercised it, they're not, you know, that's overwhelming. Same if you have cancer, and you realize you got to do something, and you have to move away, you know, from past thinking, etc, you got to start with just baby steps and move forward. So a lot of it is that holding a place for the fact that you're doing it this realizing you can only do so much at a time. And, and really the you know, you probably saw kind of the order the book is written in, what I say is that you might be great with the stuff in chapter one, but chapter two, you might be stuck at great spend some time there, you know, it's baby steps. And every day, just, you know, just like grieving or just like processing anything, every day is a new day to do that, too. So you don't necessarily wake up on day two or day 20 and say, you know, I've got all that handled, and, you know, most the time you wake up and say I still have cancer and I need to, you know, I need to be in this other place with it. So a lot of it is just being gentle, gentle motivation forward tools when they're needed, but not too many. Because I, I did see that a lot that that sort of stimulated some memories for me about when I was thinking of writing the book, mentoring doctors, especially, you know, newer ones, and they would get a cancer patient give them way too much all at once. And the patient's just like, you know, overwhelmed with, you know, so they have all this physical stuff they're doing and maybe they're doing, you know, chemo, or maybe they're getting surgery and recovering and doing 11 other things. And then they've got, you know, a 40 point list about changing their diet and their mental set and their other site. Without cancer, you can't do all that, you know, with it. So, you know, so let's, you know, let's start with one thing and move you forward and keep going. That's, I think that's the most humane way, but it's also the most sustainable way to do that.
Laura Carfang 24:16
Yeah, I hear a lot of times that, you know, cancer can be that catalyst that wakes us up. And that ignites some sort of flame within us to make behavioral changes. And another piece that I love about your book too, as you give us all of these tools and allow us to linger in various chapters as we're doing the inner work to heal internally. I think that's incredibly important what you mentioned and resonates with me very much so to say that we have to want that change, we have to want to have that mentality and shift because if it doesn't come from within it's going to sound like one more thing on our to do list and potentially, you know, depending on your your behaviors and character like it might retract, right? You say well, I don't want this at all and I'm even going to hibernate even more so It's definitely a fine line and something that people need to tread lightly on for sure. And, you know, I think one of the tools that you you share in the book is the opportunity for us to control what is in our control, and then let go of what is not in our control, I think so much of a cancer diagnosis, when you feel like everything is ripped out of you, how can we make sense of what we can do on like, kind of the small chunks, and bite sized chunks of like, day to day, this is something that's in my control. And it could be that mindset, or it could be the diet, it could be taking a walk, or an exercise, like something that is tangible, because so much of it is unknown, especially in the cancer world, right, we have, treatments are constantly changing or evolving based on how you're responding to a particular drug. And, you know, I hear a lot of times too, you know, we think we're going in for one surgery, and then lo and behold, there's an infection or something happens, or you need for breast cancer, your exchange surgeries, like, there's so much, and there's a lot of unknown. And, you know, to kind of tie this back to those various phases of grief and loss and sadness, and then unknown, but we just want control, we want to know what we can do. And I used to tell my doctors to like you're in charge of the medical side, I'm in charge of like, the health and wellness side, and we can meet halfway, and I feel that way that I am empowered, and that I can take an active role in my health. I think you speak a lot about that in your book as well.
Dr. Paul Anderson 26:30
Yeah. And it is so critically important, with, with cancer as a journey, but especially like with what you're describing where treatments can change, suddenly, surgeries Can you know everything can change suddenly, because your body is going to react the way your body reacts. And we see that all the time, you get 10 people with the same chemo regimen, and, you know, seven to one way and you know, three to three different ways. And so, you know, part of what I try to get to in the book is, those are things that you don't want to totally, like, just go on autopilot and say, Well, whatever, you know, but I mean, you only have so much control over how your surgery goes, that's, you know, you can prepare for it and all that stuff, but the rest is about the surgeon, your body and how it all works together. Same with chemo, you know, or a targeted therapy or something, your body and your immune system do the work and you may not have total control. And one of the things I've seen that gets people to stay stuck is if their focus is all on, you know, especially people that like a lot of control, that's probably that's a human condition. But, you know, some people are much more into control and other people. I've seen them get so tied up in those things that they can't really control, that there's no energy for this stuff, you can, you know, which are the harder things literally waking up and saying, you know, it's another day with cancer, but it's, you know, it's my day, it's, you know, this is, you know, this is going to whatever happens, however I feel, it's still my day, and this is going to be how it goes. And I think that that switch of doing inventory, because you know, every month is different, what's in your control, what's kind of in your control, like you could maybe choose your doctor, maybe choose whatever. But beyond that the medical side, like you say is it's going to do what it's going to do. So then you got a whole bunch of other stuff you're in control of and that and that, that is empowering and of itself, because people get to stay stuck in the area of stuff they can't control, you're automatically disqualified you like you, you're disempowered, because I can't be empowered about something I have no control over, you know, I can be empowered about how I am around that. But, you know, so focus on the stuff that you you're totally in control of. Yeah,
Laura Carfang 28:57
You know, with a cancer diagnosis I was, you want a plan, you want that roadmap, and I had to quickly learn, I think it was my second appointment after chemotherapy. And I was like, that plan has to go out the window. Like I just can't hold on to that. And it's I think it's also hard to going back to the chapters on like family and friends. They turn to you to say like, well, what's next what's happening next, they want a road map also. And so all of a sudden, it can be compounded with you know, I was given some information, the information changed. And now as I'm talking to new, the newly diagnosed it's it's very similar type of peer to peer advice of, you know, you have to be flexible and nimble and just kind of go with the flow sometimes because it'll save you some stress and heartache.
Dr. Paul Anderson 29:46
You really have to hold it with an open hand because there's just, you know, there's so many things that can change and not even go wrong. Just change you know, and People obviously we don't, you know, if we don't have cancer, we're not usually sitting around focusing on how cancer is treated and things. But, you know, I was trying to tell people look, you know, your radiation oncologist or your medical oncologist or surgical oncologist, they have huge jobs that have almost no margin for error. And so their whole world is tied up in doing dosing your radiation, or figuring out your chemo or changing your chemo or doing the right surgery for the moment. To keep you as safe and healthy as possible. So like, that's their world, they're really tied up in it. And you just don't know how many variables they have to sift through. So changes are part of the deal, usually. So, you know, pick good doctors, let them do their work, keep on top of what they're doing, ask questions, but then, you know, focus on being as prepared as possible to either do or not do treatment or be as prepared as possible to deal with what you can it's, it's a huge thing. If you think, Oh, you know, cuz I'll use this analogy. Most of us have been to the doctor because we got, you know, strep throat or we had a broken leg. Those are pretty linear treatments, you know, there's X amount of time, there's this medicine, and you're better sometime, that in the future. Cancer doesn't work that way. You know, every day, there's sort of all these variables you have thrown up in the air, and then, you know, you see which balls hit the floor first. And that's what you do. Very different. So it, it's Yeah, that's really good peer to peer advice.
Laura Carfang 31:38
100%. And I think that's a great way to reframe it as well, taking it like you're not changing it because I'm just going to be very candid. Like, I think sometimes too, it could be like the trust that we have with our doctors, right, it's like, you're given one thing. And now you're changing it on me. And I think the way you just reshaped that was like, okay, it's a positive, you're changing this because you're tailoring it. But it's my own symptoms and my reactions that I'm having, which is completely different than somebody else. And so I love that, that's great positivity, I want to pick your brain a little bit more on the mindfulness and kind of taking a deeper dive into the integrative therapies and complimentary care that you were discussing in your book. And I know you also mentioned a little bit about palliative care. And I think sometimes we think about palliative care as like, end of life and sometimes use it interchangeably with hospice, but it's not necessarily and to utilize the palliative care and integrative cares as quality of life. How, how can we speak about quality of life? And how do you define that?
Dr. Paul Anderson 32:40
I think that's a really good. And sometimes I, I forget, because I think of palliative care is really encompassing, but a lot of people do they hear palliative, and they think, Oh, no, you know, it's the same as hospice or something. Now, it can include that. But really, as I was mentioning earlier, you know, 2030 years ago, the idea of palliative oncology was just end of life care. It has come a very long way since then. So now what that really means and maybe a better term, although it's not the term people normally uses is, you know, quality of life and health enhancement is really what you're talking about in modern times. Now, he going back to just what I said earlier about, you know, you've got your surgical oncologists and medical and radiation oncologists there, their world is wrapped up in their treatments, which are so complex, they understand the need for this other stuff, but that's not their job. That's not what they do. You know, it's people like me who do the quality of life and other care. What I usually tell people is there, there's really four steps in a cancer journey. The first step is you don't know you have cancer, and its primary prevention. Most people are always making cancer cells, but they don't develop cancer don't do too later. The next step is what the book is talking about, which is diagnosis and initial treatment. And then the next step is actually recovery from treatments so that you know, you stay in remission or you get towards your mission, etc. And then the next step is secondary prevention, which is, let's not have it come back or get worse or you know, whatever. And the reason I divide it that way for people's minds is the amount of effort and energy you as a patient, have, time wise, energy wise, etc. to put into working on those things is very different at each step. primary prevention, preventing things it's that can be 100%. If you are just starting with some surgery and chemo or radiation or whatever, you aren't going to have time and energy for very much you're going to do you like to say baby steps just to shore up everything. But in the recovery part in what I would call palliative or quality of life recovery care. It's not about hospice or any of life normally, it's about let's get you recovered from, you know, all of all of this treatment you just had. It's, you know, there, there's no, uh, maybe there is I can't think of a cancer therapy of any kind. That is any fun and you come out the other side feeling healthier than you did when you started. It's, it's, you know, there's this job you're doing of treating cancer and now you know you want to recover? Well, one of the things and I get to the mental emotional part in this book, the prior book, we talked a lot about it medically, but the more you do on the other end of recovery from surgery, radiation, chemo, etc. Actually, the more calm your cancer stem cells are, and the less chance of recurrence later on. So when we're talking about palliative oncology, yeah, it's the whole spectrum. And while it might include more end of life things, that's, you know, 5% of what we're trying to do, mostly what we're trying to do is make you as healthy as possible, so that you have the lowest index of cancer wanting to come back or be aggressive, etc. So it's a, and there's, there's so you know, if I think of just what we didn't know, five or 10 years ago, but if we go back 25 years ago, was like, well, we can do something. I mean, it was, it was really, it just, you know, it's it's been logarithmically expanding. And, and the research has to, I mean, you know, the first book we had, like, over 1000, scientific, you know, resources. This book isn't so much about that, but but the mindset part, I guess, you know, big reason for the book, this, this book about the mindset is and empowerment, you can do all the, the perfect medical oncology, you can do all the perfect recovery and palliative and quality of life stuff. But if your brain is stuck in that place, where you're still angry, you, you know, don't want this cancer, you're mad at it, it's, you're a victim, your body doesn't feel the same. And so it's it's part and parcel with the external things you do, such as, you know, fixing your body after surgery, or, you know, recovering from chemo or whatever. It's also your brain being on board with that. So it, you know, moves you forward.
Laura Carfang 37:25
I couldn't agree more, I think the mental side is the muscle we have to work also, right? It's not just the physical, you know, the exercise, but how could we mentally help ourselves grow after such a traumatic diagnosis. And I completely agree, I think when we talk about the secondary prevention piece, and I do kind of want to reframe this also, because I'm also very sensitive to a lot of women in our community who were diagnosed with metastatic breast cancer de novo. And so there is some anger there where you don't have that initial early stage, to have that option. You think you're being preventative, and there's a variety of reasons why that happens. But you know, when we an app, I don't want to put words in your mouth or look for your buck. But as I was reading about the secondary prevention piece, it wasn't just a second recurrence of breast cancer, but it was that no evidence of disease or no progression of disease, right? Like, how can we take this and again, still feel empowered, and even with a terminal diagnosis still move forward. And, again, be empowered with the choices and the control that we have? Every single day that we wake up?
Dr. Paul Anderson 38:36
You did a good job putting words in but the idea was secondary prevention, of course, is you there, there are things you can do to get to a certain place there. But as you say, some people and this was a large portion of our patients started out de novo with, you know, metastatic disease, and they, you know, there isn't the first two or three steps, you know, it's just boom, here it is, and here's what we're gonna do about it. So secondary prevention, the nice thing about the more modern way of looking at it is, it's not just for people with no evidence of disease or into remission. It's also for people who are either really, we had other two other areas, one was progressive, but but slow progressive disease, and the other was stable disease. And so you may have metastatic, you know, stage four cancer, but you can do everything you can to keep it either very slow, progressive or stable. So it's not in remission, but it's remission. Like, there's a lot of things you can still do there to manage all of that because, you know, you're just as shocked but I would say yes, probably a little more anger comes up because you feel like gosh, why couldn't I have been diagnosed? Stage One, you know, like my friend did or stage two, in here I was diagnosed at stage four, which is a lot of people nowadays. You don't even, that's not part of your choices, which is terrible, it's too bad, but that's the way you know it is. So for that person, they have to rewind to the place where you process the anger and the loss of total control over everything. Plus, you're grieving the fact that you didn't get it stage one diagnosis to deal with or, or a stage two or something. And it's the same steps, it's just you, you're going to deal with different emotions, because you literally had a whole bunch of options you never got important part is, it's still so critical to to do the mental emotional and Mind Body connection, work, etc, to get beyond that, because we've literally had people with metastatic disease, who, you know, through whatever combination of therapies and, and supportive things stayed stable and had very good quality of life for years and years and years. And, yeah, they never, you know, stage four, cancer didn't go away, you don't really see that very much. But they had, you know, what they said, were wonderful life, you know, wonderful quality of life, dealt with it as it came in. And I think, you know, it's, it's, that's it, those are the elephants in the room, which are, nobody wants to talk about that real harsh reality that, you know, and again, you're not telling the person will get over it, you know, because that's, that's not, it's, you know, you don't have to get over it, you have to, you have to recognize you have every right to be angry, because this, there's nothing fair about this. But staying in the anger won't make you healthier, you know, processing it will moving forward. And we had, you know, in the, in the NIH research, the large majority of people that were doing interventional things, I was in charge of all but one where stage four people most stage for a diagnosis. And they were which makes you more amenable in research to do all sorts of things, which is what we did. But they were, they had all mostly come to the place where they were so they were an empowered group. And they didn't like having stage four cancer, and, you know, they didn't like the effects and all of that. But the reason they were part of this research project, and we're we're in my section where they knew that at some point, it would help somebody down the road.
Laura Carfang 42:48
100% response I totally agree.
Dr. Paul Anderson 42:50
Those are the people that motivate me, many of them are no longer with us, but a lot of them still are, you know, we we had one lady that was diagnosed at 85. Doctor said, she wouldn't live to see 86 and we celebrated her 90th birthday in our office, and she made it to 96 years, and she lived 10 years. And it was all her like, just the way she dealt with it. So, yeah, it's not, you know, none of the things are easy. You know, these aren't easy conversations to have with yourself, let alone with you know, people in your circle, but they're so necessary for your mind to be free to let you be as healed as you can be.
Laura Carfang 43:38
I think the positive affirmations and you know, not letting someone else dictate time, that how much time you have left to live, no one can say that, right. So right and wake up in the morning saying, today's a new day, I'm going to live it to the fullest. And you know, it's it definitely has a positive outcome and relation on your own mental health and on your body and on your outcome. So it's really great to hear.
Dr. Paul Anderson 44:05
Very much Yes.
Laura Carfang 44:06
You'll be able to buy this book cancer, the journey from diagnosis to empowerment via Amazon. It's also available on Kindle, as well as an audiobook. I will link to all of this in our show notes below. So this has just been wonderful. Thank you so much.
Dr. Paul Anderson 44:21
Thank you. It's a perfect organic conversation.
Laura Carfang 44:24
Yeah, exactly. That's how I love them too. Thank you for tuning in and listen to our podcast. If you'd like to find out more about our organization and upcoming events and ways to connect. You can find out more by visiting our website at surviving breast cancer.org. And we'd like to acknowledge that all of the information on our podcast is from personal experiences and it is not a substitute for professional medical advice. You should always consult your medical care team. If you're looking for specific topics or would like to be a guest on our show, feel free to contact me directly at Laura at surviving breast cancer.org. And of course, we have a couple social media handles. You can follow us Sat as well. For example, surviving breast cancer org all one word, as well as our podcast, specifically breast cancer conversations. Until next time, keep on thriving.
