Episode 13: Limited Choices
As soon as you’re diagnosed with cancer, you realize that your hazy understanding of “chemo” is about to get real. Whether your doctors recommend chemotherapy, radiation, surgery, or all of the above, it might feel like you don’t have a lot of say in the matter. In today’s episode, the sisters discuss patient autonomy and how far we still have to go when it comes to the availability of targeted, less toxic cancer treatments.
SHOW NOTES
Sources and Further Reading:
Vincristine (a chemo drug mentioned by Kayla)
Bleomycin (a chemo drug mentioned by Kayla)
Sneak peek for next week: The Ring Theory in the LA Times (no paywall)
TRANSCRIPT
Kayla 0:09
You're listening to the My Sister’s Cancer podcast. I'm Kayla Crum, registered nurse and writer.
Ella 0:15
And I'm Ella Beckett, social worker and cancer survivor.
Kayla 0:20
We're sisters on a mission to care for the cancer community through the sharing of real life stories, a sprinkle of sass, and lots of support.
Ella 0:28
Join us in a new kind of pity party. It's a pity so many of us carry the heavy burden of cancer alone. So let's make it a party and carry it together.
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Ella 0:43
Welcome back to the My Sister's Cancer podcast. This is one of your co-hosts, Ella Beckett, here with my sister Kayla Crum. This week, we're going to be talking about a topic that sort of transitions us from initial diagnosis into treatment. So what we're going to be discussing is, after you get that initial diagnosis, how is it decided what the next steps are or what the treatment plan is? Because a lot of the times it feels like you really don't have much of a choice in what that treatment plan is. And there's just a lot of other things that kind of fall under this umbrella topic that we wanted to touch on before we transition into other topics related to treatment. We felt like this was a good topic to kind of lead us into the next season. So one of the things that I thought about when we first started discussing this episode is how, when I was diagnosed, I remember the treatment plan was something that was just kind of told to me. It didn't feel like something that I had a lot of say in, so to speak. And that's nothing against the doctors. I mean, I think it's just kind of how it is. But it was like, here's your diagnosis. Obviously, we were just trying to process that, and then it was like, okay, now here's when you need to come in. And it was like a day later or something crazy. And then at that appointment is when they just kind of laid it all out there what the plan was, and that was that. And I just remember being so, I guess, shocked by that. And, I mean, obviously you're still reeling from the diagnosis, and then it's like you're trying to wrap your head around, okay, what chemotherapy? You're trying to learn all these terms, and you're thrust into this crazy medical jargon. And I just remember being, in a way, paralyzed by that and feeling like I didn't have a lot of choice in the matter. Kayla, would you say that that's pretty typical to the cancer experience from your perspective?
Kayla 3:15
You know, being an inpatient nurse when I worked in cancer, I didn't really get to see those diagnosis/first appointment type things. I think that, like we mentioned in episode four, everyone's experience is super different. So I think it depends on what brought you to that appointment. Like, for you, we'd been doing a lot of testing for about a month and then kind of finally got an answer, and then it was, like, full steam ahead. Let's treat this. I think that some cancers are slower growing or faster growing, or by the time they find it, it's metastasized. I do think it's fairly common for it to proceed quickly once it's identified, just because of the nature of the disease, it's constantly multiplying. But as far as the treatment plans… I guess I would say it is pretty top-down. Like, the doctors say: here's what we're going to do. And if you don't want that, you’ve kind of got to find different doctors, at least from the outset. As treatment progresses and you start having conversations about quality of life or what the goals of treatment are, especially in older people or in people with repetitive cancer, then you have a lot more say in kind of like, am I trying to cure this? Am I trying to just live the best life with what I have left? Which would be like palliative or hospice care. So there are opportunities for patients to kind of direct their care. But what we're focusing on today is that initial diagnosis appointment or your first appointment with your oncologist when they sort of say, here's the plan. And it just is so much information and you kind of are like, okay. And then they're like, see you tomorrow, so we can put your port in. And it's just like, what is happening? So I'm curious if anyone listening had a different experience or a similar experience. We'd love to hear about that in the comments on Instagram or on our website mysisterscancer.co. Yeah, I do remember feeling like “information overload” because I got to go along with mom and dad and you to your first appointment. And mom and I were, like, furiously taking notes because the doctor was super kind. We loved your oncologist. And she was, like, tearful and totally acknowledging our feelings and all the things, but she was also super smart and on top of it and was like, okay, here's what we're going to do. You know she's a stage two Hodgkin's lymphoma and a young adult classic presentation, like, classic age group for this disease. So here's a very well studied regimen - they'll usually call it a regimen - and we're going to do this many cycles of this and this many cycles of that, and then we'll do a scan, and then we'll see. And it's just like, you're jotting down these names like vincristine and bleomycin and all this stuff, and you're just like, what is even happening? I was in nursing school, and it was still overwhelming to me. So I can only imagine people with no medical exposure, like, how do you even know to question if that's what you want when you don't even understand what's happening. Is that kind of like what you're getting at? A little bit like, that it feels so strange to just turn your life over to these people speaking basically a foreign language.
Ella 06:47
Yeah, 100%, I think you said that exactly right. It's like, I was 18 years old, really little to no experience or exposure to the medical world. Honestly, I hated hospitals growing up. I had a deep fear, honestly. I did not want to go visit people in hospitals. I got pretty anxious even just going to the doctor in general, but specifically hospitals. I was like, no, thank you. And then being thrust into this, it's like, yeah, I guess I didn't even understand what my choices were or if I had choices. You know what I mean? It's like, this is what we're doing. And like you said, it's on such a rushed timeline. It felt so urgent. Like, it was like, okay, we're starting in two days. Obviously, there's just not even time to understand what's happening, let alone thinking of the questions to be asking. But then it's like, yeah, when you take a step back, you're like, oh, wow. What if someone didn't want to pursue these toxic drugs? Right? I mean, there's people that deny the, quote, typical treatment for cancer because they want to seek a more holistic or alternative medicine approach. And I remember in those few days around when I was diagnosed, there were definitely people reaching out to me. I don't know about directly to me, but to Mom or I don't know about if you had any of this, Kayla. But there were a few people that were very concerned about me doing the typical treatment regimen of chemotherapy and radiation, et cetera, if that was in my future, and giving us other ideas or alternatives or doctors that they kind of had in mind, which I also thought was really interesting. Because even though I was overwhelmed in that moment, I was also very confident in the doctors and their ability to treat my disease. So although I didn't completely understand the plan, in some ways, I felt a lot of peace in it because I knew that these doctors have years and years of experience and knowledge that I don't have. But I think this also ties back to our control episode, because, like you were saying, you're basically just turning literally your life into these people's hands and giving up a lot of control and autonomy over your body and your well-being and all the things.
Kayla 09:31
Yeah. I think that I feel glad or thankful that we were in a pretty good place with our relationship towards medicine, just because a lot of people get burned by the healthcare system and don't trust doctors and sometimes for a very good reason due to very poor experiences. Or they grew up where you only went to the doctor for a broken arm or like a life threatening emergency. And so I just think that we were well-positioned just from growing up. Our parents sort of raised us like, you go to the doctor once a year to get a checkup. We trust antibiotics, we trust vaccines, all of this stuff. And then, I mean, I was already in nursing school, so that made us feel like we could trust this team of professionals. I do think your doctor in particular, with her warmth and empathy and care, made us trust her in that moment of meeting her, showed us her human side and then the smart side, which was key, I think, to getting that trust established. So I do just want to acknowledge, I get that not everyone walks into those appointments with that level of trust in the medical establishment, and sometimes for a very good reason. We also were familiar with that health care system in general. We had had experiences with that hospital before that were mostly positive. There's always negative when it's a huge hospital system, but we had had a few positive experiences there and so it all just added up to us being like, okay, we don't know what the heck is going on, but we know that these people are smart and going to take good care of us. That's a whole nother episode to get into the lack of access that people have to quality health care and specialists in particular. I feel really fortunate that we lived like an hour away from a major medical center, like level one trauma and specialists of all different kinds, because some people have to travel hours and hours to even get the type of cancer doctor that they need. I think one thing I want to make clear to our listeners is that the treatment for cancer has not progressed very much in the last hundred years. I mean, it has and it hasn't. And it's very much dependent on the type of cancer you have. But we're pretty much still doing what I would call blunt instruments. So chemotherapy, radiation, surgery, and that chemo can be oral or injected, but we're still treating mostly all the cells in your body because we don't have more specific drugs, which I think we've touched on this before and we will more in a future episode. But chemo kills all the quick-growing cells in your body, so that gets the cancer, but then that also gets your hair and your lining of your mouth and your nails. And like radiation, they do a really good job targeting areas, but it's going to get the areas next door. So it's strange that we've made so many advances in a way, and yet at the same time, there's still so much damage we're doing with the very thing we're giving people to cure them. So all of that to say, I just think it's overwhelming when you go to that first appointment or two and just get all this stuff thrown at you. Like, you really have no idea what you're getting into. And at least in our experience with you, it wasn't like, here's an option A, and here's an option B. Because I got diagnosed with acid reflux. This is just like a random example. And the doctor's like, okay, you could cut all these things, all these delicious things, out of your diet, or you could take this pill. It's, like, over the counter to help with your reflux. Or you could do nothing and just see if you want to just tolerate it how it is. Sometimes when you go in for a basic medical problem, they sort of are like, here's a couple of options, and then you can kind of decide. That's not often the case with cancer, because these drugs, the chemotherapy in particular, has been studied in various patterns. So, like, the order in which it's given, the dose, how much of it, how many days, with what other chemo drugs. And those all will add up to be regimens. And then they'll study, like, which regimen does best in the 18- to 22-year-old population of Hodgkin’s lymphoma patients. And so these doctors, I mean, they make good money for a reason. Like, they're reading all the latest literature, like academic scholarship on all of these regimens. And then that's why - what they're recommending based off of in a good scenario. Hopefully your doctor is up on all of that. I do worry that in some instances, doctors are just kind of doing what they've always done. I mean, they have to stay up with the times to an extent, but some systems are maybe less quick to update than others. Some doctors are more sort of cutting edge and following the latest research, and others are not. So I don't know if I just muddied the waters or if that made it any clearer how all of this gets to you. It's not like your doctor is just there looking in their back room like, yeah, we have these three things we'll give to you. That's not it at all. It's like they take this research and it's studied and studied and studied by other people, usually not by that doctor themselves, typically, so - and then they're recommending it to you. So it's not like no thought is going into it. It's just alarming as the patient to get told, here's the path. And then if you want to deviate from that, you kind of have to go find a second opinion.
Ella 15:58
Yeah, and I think what we were saying earlier, too, is really important to draw out here, how oftentimes the timeline is so rushed. Like you were saying with a second opinion, if you don't think you want what your doctor is recommending, a lot of times it's just such a pinched timeline that they want to get started ASAP. You might not even have the time to go seek that out because it's so overwhelming, I guess, that you would rather just go with what your doctor is saying. And, I mean, I think there's a lot of different things that this is true for, one of which is the fertility piece, especially when you are a teenager or a young adult. I think they, in my opinion, don't give you enough time or space to consider freezing your eggs or your sperm. In my experience, it was kind of just casually brought up, like, the day we were supposed to start treatment, I think, or like, a few days before when I was supposed to get my port in. And it was like, oh, is this something you wanted to do? To me, it felt like it was an afterthought. And I think they're doing a lot more in hospitals recently to target the AYA group and to really think about these things and to kind of maybe pause the treatment plan so that people have the time and space to consider future families, et cetera. I just think that rushed timeline really plays in here and makes a lot of other things not even really an option in that time between the initial diagnosis and getting the ball rolling with treatment because it feels so urgent.
Kayla 18:02
I agree. I think that specialists in particular, we need them, and yet they're trained to focus on their thing, right? And so the cancer doctor's job is to rid you of cancer and/or suppress the cancer enough that you can have good quality of life. They're not your PCP, your primary care provider, who's looking at the whole picture, right, of your whole health now into the future. A good cancer doctor - oncologist - is thinking about that, but their goal is always the cancer, and we’ve got to do it now before it grows. It reminds me of, like, in middle and high school. You know, you like, say you play on the basketball team and you have a choir director, and then you have teachers and you have parents. And I remember, like, complaining with my friends as a teenager, like, everyone thinks - actually, one of my good friends said it this way, and she was so right. She said, “Everyone wants 100%, but I only have 100% total to give.” So it's like, my basketball coach wants 100%, my choir director wants 100%. I have to divvy up my 100% among all of them. I think that's just true in life. So it almost feels like the oncologist is that basketball coach who just wants 100% of your thoughts, care, whatever, to go towards beating this cancer, eliminating this cancer. Whereas some people might be like, yeah, but if it prevents me from having a family, I don't even want to go there. Or some people might be like, because I'm in the last two months of a very important PhD program or whatever, I want to delay treatment. In general, oncologists don't want to hear stuff like that. And for women in particular, like you were mentioning the freezing of the eggs, like most things, it's more unfair to women because men could quick go do that literally the next day, preserve their sperm, whereas women, it would be a delay of weeks, if not months, to give hormone injections, to then harvest the eggs, not to mention the cost. It would all be out of pocket. 99% of the time insurance is not going to touch that. So you'd have to raise the funds, take the time. Meanwhile, the cancer is growing. So it's like, those are tough calls and I don't feel like people have the bandwidth to take a breath and really look at it all. Now looking back, selfishly for me, I'm like, oh, well, I'd rather have you than have you had delayed it and delayed your treatment, whatever, to harvest your eggs. But it's like, everyone should have the time to make that decision for themselves and that's just difficult. And then it gets even trickier as people get younger. You think about like 12-, 13-, 14-, 15-year-old girls, they're in the same scenario, but people are even less asking that question than when they're a college student and beyond. So that's wild to think about. Women, in case the listeners don't know, are born with all the eggs they'll ever have as babies, which is bizarre. So really, even children with cancer, this can happen to them too. So just so much to consider and yet you're kind of given this plan and you just got to go for it unless you really stand up for yourself.
Ella 21:39
Yeah, it's a lot to take in, for sure.
Kayla 21:44
Do you feel like there were times in the process where you wanted to say, like, wait a minute. Is there a better way, or is this the only way? Or is it only in retrospect that you're kind of like, maybe I had more options available to me that I didn't realize? I don’t know.
Ella 22:03
Yeah, I mean, I think definitely with more time to reflect and also just being older, and I feel like just in the last few years, I've kind of stepped into more understanding the options that are available to me in life, if that makes sense. Like, yes, I am an adult now. I think when I was 18, in a lot of ways, I was still in the mindset of a kid, and maybe I didn't realize that there could be a better way or that I didn't have to pick my poison, so to speak. I just so clearly remember I would talk about it with dad or, like, one of our grandmas would mention, “what does it feel like when the poison or the chemo is literally going through your body” and it's like, it - I just remember being so struck by feeling like I really didn't have a choice in the matter. I was like, this is what I had to do to move forward from this. And, yeah, it's just so counterintuitive that you're, like, pumping your body full of all these super harmful things. For those of you who don't know, the nurses who administer the chemotherapy therapy literally have to gown themselves, put on a lot of extra protective stuff like gloves and a mask and all these things to even touch the chemo bag that they're going to hook up to the IV that will then drip through your veins. It's just so counterintuitive that you're putting all this toxicity into your body to make you better. But at the same time, I knew that it had worked for hundreds of thousands of people before, and there really aren't a lot of other options available to me.
Kayla 24:05
Yeah, I don't want anyone to hear us saying we think you should have just done alternative treatment. That's not what we're saying. We're just more, like, wrestling with the idea that once you get a diagnosis of cancer, it's a very tight timeline, and pressure is on you from all medical professionals to move forward immediately. And nine times out of ten, that's probably your best choice. I think that people don't understand medicine is a field of our best educated guess with the knowledge and research we have today, and it evolves every day. And so that's why, even during this pandemic we just had, the things changed, right? It changed because we learned more, we researched more, we understood more about the virus. If it didn't change, that would be suspicious. Because science, the scientific method that you learn in elementary school, is you have a hypothesis and you test it, and then you adjust your hypothesis based on what you learned. I mean, they're just making their best educated guess based on all the information available to them. I just do want people to have at least the self-advocacy to say, “You know what? I need 48 hours to think about this.” Or “I would like a second opinion,” especially if you don't feel that connection or at least trust with your first oncologist. Nothing on this podcast is ever meant to be medical advice, but I want people to feel like - an additional 24 to 48 hours to think about freezing your eggs or find a second opinion, like - that is your choice. And it really doesn't feel like it is. They really don't make you feel like you have an option. It's kind of like, here's what you have to do. So I just want people to realize that you do still have a voice and a tiny bit of control. I don't recommend waiting a week or like a month or whatever. Obviously, everyone can make their own choices, but I just want people to not feel like once they get diagnosed that they have no say anymore.
Ella 26:32
Thank you for saying that, because I feel like that's a really important point to make, that 24 hours, 48 hours at the end of the day probably isn't going to make that much of a difference. And if you feel like you need that time, it's a big deal. And it's important to think about the ramifications of the treatment and the possible side effects. I mean, I remember they just rattled them off in that first appointment, right? Like, here's all the things that could happen to you as a result of this treatment. And that’s not - we're not going to just be like, oh, let's not do it then, because of all those things. But, I mean, even just taking the time to kind of digest all of that and think about how that could impact your life going forward, I think that's really a good thing. Our conversation is making me think about a book that I read earlier this year. It's called “The First Cell.” And it's by Azra Raza, I believe her name is. And the whole book is really an argument that there has to be a better way, that our current ways of treating cancer are just not sufficient. And she's just a brilliant oncologist who actually lost her husband to cancer and just has years and years of experience and research, and what you were saying earlier made me think a lot about this because, really cancer research - I mean, we have come a long way, but we also really haven't. And her argument is so strong that there has to be something else that we can do. And I came across this article that she was quoted in, saying that: “The time has come to think about the ghastly toxicities of therapies that often achieve so little.” And I think she was specifically speaking to cancer that has metastasized or patients with recurring disease, specifically if they're near the end of their lives. But I think it's just important to kind of sit with the ugly truth of the side effects of these drugs that we're using and then the difficult reality that sometimes they don't even work and sometimes they only prolong life for a little while. And so I really recommend this book. I mean, I wrestled my way through it. It's a hard read, but it really made me think about a lot of different things and about cancer treatment more broadly and how - yeah. Is there something else that we can be doing? I say we as if I'm a part of the cancer research community, but I just think it raises really important questions.
Kayla 29:39
It's so tricky because… like, I wouldn't take back any of it. Like the money spent. I always joke that you're like my million dollar sister or whatever. Thankfully not out-of-pocket, but collectively, the money spent on - by insurance and the hospitals and all the money we dump into saving one person's life, all the toxins we pumped into you to save your life. I wouldn't take any of it back. And maybe it's easy for us to sit here and ponder these things because you made it. And if you hadn't, maybe I'd feel differently. But I do have a broader experience than just your cancer from my time as an inpatient cancer nurse. And I do think, especially as you look at older adults or people with 2nd, 3rd, 4th cancers, we need to just be having these holistic quality of life conversations sooner and sooner and sooner. Almost from the very first appointment. Like it makes sense to me if the oncologist were to say, “Here's your diagnosis, we're prepared to move full steam ahead to completely eradicate it from your body. Is that also your goal?” And then if the person is like, “You know, I don't know,” I just think that whole lens - it's headed in the right direction. I think it's happening more and more. But that really needs to be encouraged. Or even - I remember along the way in your treatment - and we'll talk about this, I'm sure, in future episodes. But sometimes, things did have to get tweaked. So like, we have this regimen that was the best recommended regimen, and then you react to a drug or you can't handle the high amount of this other drug because the side effects are just, like, making you dehydrated because you're puking nonstop and we can't make it stop. It becomes difficult to make those decisions and you kind of feel like you're failing, like, a school test or something if you are like, okay, yeah, let's back down on this drug, or whatever. I think it can feel that way. Not every doctor makes you feel that way, but I think the whole ongoing conversation needs to be there between doctor and patient of like, what are our goals? What are we willing to give up in the process of getting there? You know? Things like that. That's interesting, I haven't read “The First Cell.” I've read something called “The Emperor of All Maladies” by Siddhartha Mukherjee. I probably did not say his name right. I apologize. He does a long historical look at cancer from, like, Egyptian hieroglyphs, which is our first discovery or our first record of a tumor in Egyptian hieroglyphs all the way to today. It was written in 2010, so now it's already 13 years old. But there's also a PBS special based off of this book, and if you don't mind getting a little sciency and a little historical, that was a really good book, too. And he talks a lot about how nonspecific our cancer treatments are and how, like you said, there has to be a better way. And he really thinks the future is in our genes. So we might have mentioned this before, but because cancer is an overgrowth of your cells that each have your own DNA code in them, he's envisioning a future - and it's somewhat pie in the sky, but - he was like, imagine if we had the ability for a patient to come in with her entire cancer genome on a flash drive and give it to the doctor, and the doctor can look at the different mutations - because a mutation happened in your DNA to make your cells act like this. And then we could say, oh, like, we can use this drug because it's this specific mutation, and we can use that drug for that and all the way down to that cellular DNA level. I know people are studying it. I know you even received some immunotherapy, which was a little bit more targeted, in your maintenance phase after your transplant. So, like, there are things out there. I also have worked in the cystic fibrosis world. They have drugs now that are targeting a gene mutation specifically that are having huge improvements in their life expectancy and quality of life. So there is hope for that kind of thing. It's just so hard when you're diagnosed; it's like you're blindsided, and then you don't even know what questions to ask, right? Because you don't know what you don't know. I guess the other takeaway would be don't be afraid to speak up at any point, right? So you get overwhelmed. You go ahead and start the plan, and then, like, two weeks later, you're just still feeling confused and overwhelmed. You can ask your nurse, your doctor, to sit down with you again and be like, okay, now that I've gotten out of the shock phase, let's look at this again and make sure we're on the same page. I just don't think people realize, like you said, people were reaching out, like, well, I know this doctor, and I know that doctor, and it's, like, from a good place of wanting to help. And it's so tricky because it's like, yeah, how do you know who the best doctor is and what the best plan is? You have no clue most of the time. I don't know. It is just huge trust, kind of putting your life in this stranger's hands, honestly. I wonder how that felt for Mom and Dad to just put their child's life in a stranger's hands.
Ella 35:40
Yeah. I do want to add, I am grateful for my access to the health care that I received and to the treatment that was available to me, because I know that's not the case for everyone in other parts of the country and of the world, but also in other periods of time. I mean, I think we've had multiple great-grandparents that passed away from cancer because there really wasn't a lot that they could do in the time that they were living in. And so I do just want to say, yes, we've been probing and questioning our current forms of treatment. But that's not to say that we're not incredibly thankful for the leaps and bounds that the scientific community has taken in this area and for the treatments that have been developed in the last 40 years or so. So, speaking of treatment, like I mentioned earlier in the episode, we're going to be kind of taking a bit of a turn in our topics coming up on the podcast. Kayla, do you want to give us a tease of what's to come in the fall?
Kayla 37:02
Yeah. So believe it or not, all these episodes have more or less focused on diagnosis and the early days of having cancer. We've zoomed in on what that experience is like from a young adult's perspective on the health care system during that time of diagnosis, some of the feelings that might come up and how all of a sudden you live in this before and after, and even touched on anniversaries when diagnosis days come up year after year. But now, in the fall, as the leaves start to fall from the trees and nature starts to die and ready itself for a time of isolation and winter, we're going to reflect that in our podcast by talking about the treatment phase of cancer more specifically. So we'll get a little more into the nitty gritty of side effects and what the treatments are. We'll talk more about how family and friends can be present and helpful. We've touched on these things before, like I said, but we're going to extend that out into more treatment-specific topics and discussions, things like humor throughout your treatment experience and family roles and how that changes. Treatment can be short or long or anywhere in between. So again, it's different for everyone, but that's a little bit of where we're headed. Cancer is so broad that there's still much more to discuss. Next week in particular, we'll be talking about something called the ring theory and how different people in your life can play different supporting roles throughout your treatment time. So thank you so much for listening. Check us out on Instagram or our website, mysisterscancer.co, and you can find us on Patreon under My Sister's Cancer. Have a great week and we'll see you next time.