A New Perspective on Cancer Care: Navigating Unmet Needs and Discovering Silver Linings

Hello and welcome to In The Rising, a health and wellness podcast for those going through and those supporting those going through cancer. My name is Bettina Brown and I'm board certified in physical therapy, wound care and lymphedema And you know, for me cancer is very personal. It's affected my friends, my immediate and my not so immediate family And therefore I created this podcast and fit after breastcancercom to address the multiple dimensions of our lives during and after recovery. Hello, i'm really excited to talk to you about something I came across the other day And it's a small video series held by the American Journal of Managed Care, kind of a peer exchange conversation. So they had someone from the Mayo Clinic College of Medicine out of Minnesota, ut Southwestern Medical Center, memorial Sloan Ketterling Cancer Center you know all the places that we know and are familiar with And they had a panel of different physicians that talked about different things the patient journey, clinical presentation, and I really liked the one about unmet needs in breast cancer treatment And I do believe it's almost unmet needs in cancer treatment period. What I learned was this and even as the as the provider, Dr Mulaghi I hope I'm saying that correctly stated this. It was not something that I thought about initially, and she went on to describe that she feels one of the greatest unmet needs is from detection to diagnosis. And even if that diagnosis ends up being that there is no breast cancer or cancer diagnosis, what are we doing in between? And it really made me pause, because isn't that so true? When we find or feel something, we have to go get a mammogram or we have to have some biopsy completed, and then there's this waiting period. It's a waiting period where there's a lot of stress, a lot of anxiety, a lot of fear, and a lot of us will then go to do something that we know is not right, and that's go on the internet, go on Google or Dr Google, as a lot of people call it and look up everything. And when you're doing that, what are you coming across right? Worst case scenarios. Our brain just tends to go into worst case scenarios. What is really the assistance that anyone else can can give someone at that time? What? what else is out there? And I came across this phrase that I really did like a lot. It is from Aussie at all, which means there's a group of researchers and they describe an unmet need as having a desire to receive support, and that demand is not met by the care system. And so really, we're having to look at our health care system, our health process system, and see how can we meet some of these unmet needs. And there are a lot of areas there. Unmet need can be information, it can even just be a conversation, dialogue with your care team, having the assistance and care to navigate things psycho and psycho, social support, spiritual issues And I want to pause there How many of us really reconnect, or you know someone that feels like they have a much stronger spiritual connection after a diagnosis or a diagnosis scare? I'm wondering what is the next step, really trying to come in with what their purpose is. And that is a huge need that not everyone is able to find, and it doesn't have to be necessarily the responsibility of the health care system, but it is the responsibility of us in health care to really help navigate point A to point B and point B to point C. We've done a really good job with learning so much about who belongs with what kind of treatment. We've learned so much about genetics. We've learned so much about different medications. We've learned so, so much And yet we still don't have the basic, we don't have A to B And there is an evaluation out there called the needs evaluation questionnaire that really came out for those that were an oncology unit in the hospital that they would have the ability to to ask questions, that this questionnaire actually gave the provider and the patient an ability to have a conversation. A lot of times, you don't know what you don't know, but a lot of times, what you don't know can be asked by someone who has been asked that same question many, many times. As the health care system continues on and they learn their systems and they learn what the next steps are, they have the opportunity to develop something better, and I know this, i know I've seen it myself and I've been a part of that myself, and I think it's important, then, to one, as a patient, actually open up about what your needs are, open up about what your questions are, and that does mean there's a little responsibility on our side as a patient as well. Come with your questions whether you feel that they are of value, because I've heard that so many times. Well, i didn't want to bother them with my questions. They're on the clock. Bother them with your questions. This is what they went to school for. This is what they went into this area for to provide answers to questions. There are a lot of questions that they may have themselves, but they're here for you and yours And your specific question may be the same question that someone's heard 100 times, but your specific question and how it pertains to your life, there's only one question, only one, you, and make that count. The other thing think about where you are at this moment and what are those next steps, and don't go down the spiral of everything is going to be bad, even if the answer is that the detection really detected something, that the answer is yes, that there is cancer. It does not automatically mean everything is on the absolute worst end of everything And that is where our brain goes, it is where our mind goes And that's that's actually human experience. And give yourself that self compassion to allow that experience. But also give yourself the opportunity to not be at level Z. Right That you're on a, still working with B, but it does not mean that it's a straight shot to Z and that everything's over. Allow yourself the opportunity to still have some hope and to still dream and to still ask questions about what is really hope and what is false hope And on to three. I would ask some questions and look for support. I've had guests on here before that have in various ways talked about support And just because it is only you and you have your own perception, you yourself are also kind of alone And it just is a different conversation when you talk to other people that feel that same alone. There is camaraderie with that, there is kinship with that, there is connection, and so support does not have to be sitting in a room with everyone's chair in a circle and you're having this conversation. I've had so many people say that their biggest support were the people they met on Facebook. I've had people say that their support actually came in the form of having a quick conversation at the grocery store with someone who just gave them a smile or gave them a how's your day going? Their support came in different ways. Their support can also come from nature and enjoying being outside, bathing in nature and feeling just connection with something bigger than themselves. It is okay to look for that support. It does not mean someone is weak. It means someone is also strong in their ability to be vulnerable And in that vulnerability. That's where we build a lot of connection. And the other thing I would also extend from what we have learned is go ahead and do some of your own research. And even though I just talked about Dr Google, what about asking questions behind those questions? Do some research and don't be intimidated by all the letters that people have after their names because they sat in a lot of classes and really you get those And I have a few myself. You get a lot of that from regurgitation. You don't get it from compassion and you don't get it from experience. A lot of times You get it from really learning, really reviewing. But what about yourself? You can get your own PhD in anything that you want and you don't have to have any formal education. Real wisdom comes from asking questions. Yes, there are some studies out there, but what about this? Or I'm curious about that, if something seems a little woo-woo to you but you're interested in it? you're about looking into nutrition, you're about looking into different pathways. Go ahead and explore them. There is no right answer, there is no wrong answer for you on your journey, but having the ability to open up conversation, to open dialogue about different things that may be unmet for you, is so important. And lastly, what I've come across from so many clients and patients that I've had is this kind of practice of looking at your unmet needs helps people realize that some of these needs have been unmet for quite some time. We don't often have a relationship need suddenly when we have a diagnosis or when we're going in that phase which seems like it takes forever from detection to diagnosis or detection to study. We may have had that need for a long time. Maybe this episode of diagnosis to detection and detection diagnosis may awaken you to realize that you have had a spiritual gap for some time, looking at this as an opportunity to have your eyes open and your heart open and your mind maybe in a place where you can build that connection and a stronger value and a stronger sense of self. Because of this experience, regardless of the answer And there is a lot of value to that Some of the people that I felt were most satisfied with their life and their life choices and their growth were the ones that had the opportunity to really evaluate what their unmet needs were. They weren't just health related, they were life related career, financial, relational, spiritual And when we're looking at what unmet needs we have, we can build a better life and grow with that And having this circumstance, even though it's not one any of us, myself included, would ever want. Maybe there is just a little bit of a silver lining that we will have the opportunity and the pause, the time out that we didn't look for, but is here to really look at those needs. And for today's power quote I am going to share, amy Polars It's never overreacting to ask for what you want and need, and I like that quote. I think we can live by that a little bit more. It's not overreacting, it is a normal reaction. I thank you so much for your time today because you know what. It's something we don't get back, and if you feel that this podcast was something that brought you joy or gave you an aha moment or you know someone that would benefit, i invite you to share it. We never know what kind of change we can lead if we put this in the hands and ears of those that need it most. And until next time, let's keep building one another up.