Discovering cancer during a prenatal checkup was a curveball I never saw coming. Listen closely as I open up about my battle with HPV-related cancer, diving into the emotional rollercoaster from the initial diagnosis of low-grade dysplasia to the eventual necessity of treatment for high-grade dysplasia. Brad joins me, offering a unique lens through his own fight with lymphoma, casting it as an unwelcome guest, much like a pregnancy.
The conversation then shifts gears to a critical comparison of healthcare systems as we juxtapose the Dutch model against the American one. We dissect the subtler points of socialized medicine, discuss the implications of holistic versus aggressive treatments, and the delicate balance required in managing cancer care. This episode peels back the layers of ethical considerations in personalized medicine, the insightful impact of rapid body autopsy programs, and the myths surrounding treatment aggressiveness.
Join Brad and me as we navigate these intricate waters, aiming to shed light on the complexities of cancer care and the pursuit of patient-centric treatment strategies.
Discovering cancer during a prenatal checkup was a curveball I never saw coming. Listen closely as I open up about my battle with HPV-related cancer, diving into the emotional rollercoaster from the initial diagnosis of low-grade dysplasia to the eventual necessity of treatment for high-grade dysplasia. Brad joins me, offering a unique lens through his own fight with lymphoma, casting it as an unwelcome guest, much like a pregnancy.
The conversation then shifts gears to a critical comparison of healthcare systems as we juxtapose the Dutch model against the American one. We dissect the subtler points of socialized medicine, discuss the implications of holistic versus aggressive treatments, and the delicate balance required in managing cancer care. This episode peels back the layers of ethical considerations in personalized medicine, the insightful impact of rapid body autopsy programs, and the myths surrounding treatment aggressiveness.
Join Brad and me as we navigate these intricate waters, aiming to shed light on the complexities of cancer care and the pursuit of patient-centric treatment strategies.
Good morning everybody. Welcome to another episode of Cancer Survivor MD's podcast. Today, Brad and I will be talking about the initial treatment phase of our cancer diagnosis. Good morning, brad.
Brad Buchanan:
Good morning Josie. How are you?
G van Londen:
Good. Thank you for waking up so early for me. I know 7 am at your local time. It's 10 am here. I really appreciate it, so sip your coffee and let's have a little chat together. But now today we will be talking about our initial treatment phase. We will reserve talking about cancer recurrence and cancer complications in future episodes, but today we will be limiting ourselves to the initial cancer treatment phase. Brett and I had discussed that I will start, so here we go.
G van Londen:
I think many of you know that I had a HPV-related cancer which was found on a pup smear. I don't remember exactly the timeframe because this is in the early 2000s, but as part of a prenatal workup, the pup smear was sent off and it was found to be low-grade dysplasia, a precancerous lesion. At the time that this was found, I was pregnant and so there was nothing they could do about that, concerning that any procedures around the cervix impact my ability to maintain the pregnancy, and so they left it alone. I carried a pregnancy for months which was somewhat burdened, if that's the word you use, by this blank cloud hanging over me that this pap smear was abnormal and we couldn't really do much about it, but I reassured myself that this was, at that point, low-grade dysplasia. Everybody said and I told myself things should be okay. So on some recovery time postpartum, before we could repeat the pup smear to let inflammatory changes related to the pregnancy settle down. So at that point it was about a year after the last pup smear was done, which was the one with the low-grade dysplasia, and that repeat pup smear came back normal again Again.
G van Londen:
My memories are a little bit convoluted. In the exam room they would use vinegar. Somehow vinegar works to highlight abnormal lesions in your gyne tract. So they applied at the time of the pap smear performance. They applied vinegar, they found abnormal lesions, they biopsied it and they told me that they think they're done. There might be another area there. Hearing those words obviously didn't feel good. So I told them what are we going to do about that? And on further nudging by me, they took another biopsy and so that pap smear, that biopsy, were sent off and came back at this point with hydrate dysplasia, which is the next step before the cancer. And so I was very grateful that I nudged them to take that biopsy and at that point the treatment was pretty straightforward.
G van Londen:
No-transcript my situation. However, little did I know that this saga would continue to go on for 15 years, as we will tell you in the next episode. But that was my initial treatment, pretty straightforward, and I was very glad to have finished that initial treatment, and that is my short story. Red story, however, is a little bit longer. Let me look at my notes to make sure that I didn't forget anything. Yes, I did not forget anything. The only thing I wanted to add is that ongoing monitoring and intermittent follow-up, as requested by your provider, should be able to limit any cervical cancer-related mortality. Although nothing is guaranteed in medicine, this doesn't mean your morbidity is not affected, as we will share in the next episodes. That is my story, grant. I don't know if that story was clear. If you have any questions about that, yeah, it was clear.
Brad Buchanan:
I'm just curious was it just a coincidence that it was discovered while you were pregnant, or did pregnancy maybe have something to do with causing those abnormal?
G van Londen:
Yeah, that's a very good point and I asked myself the same question. I'm not an expert and I haven't looked at it in the last 10 years or so that pregnancy itself can potentially accelerate the transition from low dysplastic cells to higher dysplastic cells and maybe even cancerous lesions. It's a whole spectrum which usually in cervical cancer goes slowly. But there are some studies that reflect on the fact that pregnancy can perhaps maybe accelerate the process. But it's really hard to investigate that. It's really hard to obviously randomize women to plus or minus pregnancy. Let's sit on our hands and let's watch this develop and evolve. So these are mostly empirical, descriptional, motivational studies. But yes, it's a very good question or motivational studies.
Brad Buchanan:
But yes, it's a very good question. Yeah, it's funny, because I forget who it was who compared my cancer lymphoma to a pregnancy, if you can believe it, and I even wrote a poem about that in my cancer book, the Scars Align. It's called the False Gestation. Do you want to hear it?
G van Londen:
Yes, it's handy.
Brad Buchanan:
It's handy in my head.
G van Londen:
Okay, Blanco.
Brad Buchanan:
This cancer is a pregnancy of unknown origin and duration, confinement, labor and abortion. Over and over Refractory pattern of mindless cellular reproduction. I piss dead drugs and their victims away like water Sluice. Conception and its network of slaughterhouses Beget and bugger the decaying energies of a becoming. I don't want to understand. I already have all of the fatherhood I'd ever need to milk and mourn in this weakened state or in what lies beyond.
Brad Buchanan:
So that's what I did with that idea that cancer itself is a form of pregnancy. You know, I mean conceptually. I see why the two have something in common. Right, you are housing, in a way, a new entity that doesn't really belong inherently to your body, but your body is feeding it, your body is having to tolerate it and eventually it will hopefully go away and become its own thing, or anyway. It was just such a strange metaphor that, as a poet, I couldn't resist writing about it, and it was actually during my treatments, actually my first phase of chemotherapy treatments that that metaphor was used and that some of the stuff that's described in the in the poem pissing away dead drugs and so forth that was a pretty literal description of what was going on as I was being finally aggressively treated for my cancer. So yeah, the link between cancer and pregnancy. I asked my question very speculatively, but the fact that there was some kind of link that pregnancy can accelerate that form of cancer is morbidly fascinating, I guess you could say.
G van Londen:
Yes, I think there's still a lot to be understood about many things in our body. I wonder it's interesting how poetry really helps you process things. It's healing for you. It's really interesting how different people, I guess, process things differently. My husband likes to write songs. I sort of like to doodle. We all have different ways. I guess it's how our brain is wired differently. It requires different healing methods, and for some people that's writing.
Brad Buchanan:
Yeah, it's a safe way to express a lot of potentially very negative feelings. Basically, like when I was diagnosed with cancer and then in treatment for it, I already had two kids. I knew that there was no possibility of having any other kids and, yeah, being a father was challenging enough, let alone being a mother to cancer. That was a bridge too far and I just it was strange to be put in that situation of saying, yeah, you're kind of gestating a cancer in there, buddy, it's not like that's not really what I set out to do, and can I just stick to being a father to my two existing daughters, who aren't threatening to kill me every day the way this cancer is? So it was a metaphor that really didn't help me accept anything that was going on.
Brad Buchanan:
But, yeah, writing a poem anyway was a way to encourage myself of the feelings of frustration and fear I suppose that I was experiencing during my initial treatment phase, which I'll get into in more detail, of course. But I was frustrated because they hadn't caught the cancer very early. It had already spread to my lung and it burst and so forth, and when the treatments finally started, they were very unpleasant at first and they kind of hammered me, which I will talk more about later. But yeah, if I was pregnant with cancer, I was pregnant. By that point, I'd been pregnant for about a year.
Brad Buchanan:
By the time those treatments really got going. That cancer had been there for a long time, longer than any normal human gestational process would hopefully take him.
G van Londen:
But you see how the doctor I think it was a physician how this person said something sort of randomly, but that word or that sentence stuck with you all the way up until now. It made a very big impression on you yeah words, impression Words. Providers may not always understand how they hit us and we may not understand why they hit the way they hit. But sometimes words can really stick with us in healing ways, but sometimes also in damaging ways.
Brad Buchanan:
Yeah, I mean, I think the way to cope with potentially damaging words is to repurpose them and make them your own, weave them into your own story or your own narrative and like it's funny because after our first child, nora, was born, I had appendicitis, like I developed, and this is how I look back on it is almost it was a sympathetic pregnancy, as happens in a lot of cultures actually, where men have some of the same symptoms as women have when their significant others are pregnant with children.
Brad Buchanan:
Men don't always, they don't behave the way Western men do, just sort of did traditionally, sitting out in the waiting room or going to play cards with their buddies, handing out cigars and so forth. In a lot of cultures where pregnancy is, I suppose, more central, because human beings are scarcer and everyone is really rooting hard for this woman to give birth to a child, the men kind of enter into it more fully. I think the name for that is a couvad, a French word. So yeah, I consider that my appendicitis was kind of a couvad. It was a little mini pregnancy and they had to go in and abort the fetus because it was hurting like heck.
G van Londen:
Yeah.
Brad Buchanan:
But Nora was maybe a couple of months old and I definitely feel like I have more of a nurturing side perhaps than a lot of men in my generation. In a way, I didn't want to think of the cancer as a pregnancy. I didn't want to feel any tenderness or love towards the thing in my body. And yet being a father was a very transformative event for me. And, yeah, becoming a parent period was an extremely important event for me, physiologically even, as well as emotionally and and intellectually. I learned a lot about the human body because of going to prenatal classes and understanding a little more the process, how it all works and how birth operates and anyway. So becoming a parent was almost like a soft initiation into the medical world that I then was plunged into willy-nilly in a life-or-death situation when cancer entered my life.
G van Londen:
So, before you go into your cancer treatment story, the word that pops up in my head is symbiosis. We're learning more and more and we have much more to learn, that obviously our body constantly does many things right, but also sometimes things wrong, and our body corrects for that. But sometimes cancer cells sort of live in symbiosis with us. We keep it under control. Our body doesn't necessarily prevent it from happening, but it keeps us sort of under control. And where I'm going with this is there's a big debate going on as to whether or not we're over-diagnosing cancers because our body would have taken care of it over time and we're undergoing unnecessary treatments with toxicity, while it wasn't a problem that needed treatment to begin with. But it's a tricky situation because how do you know in advance?
G van Londen:
yeah but it's going to be one of those things that your body will take care of on its own, versus it won't. That is the tricky situation, but that's sort of what you remind me of symbiosis.
Brad Buchanan:
Yeah.
G van Londen:
One clarification I would like to make is this word, symbiosis that I may not necessarily be the right wording, because I think that implies mutual benefit. I think maybe it's more an opportunistic relationship.
Brad Buchanan:
maybe I was also going to suggest homeostasis, which you're probably better able to define than I am.
G van Londen:
It sort of reflects a steady state.
Brad Buchanan:
Yes.
G van Londen:
Where things are under control calm, quiet, in balance. Yeah we're coexisting with our cancer Without it bothering us. It's all about benefit risk ratio. Do we anticipate the benefit of the treatment is going to outweigh the risk of the treatment, and only then should you move forward with treatment.
Brad Buchanan:
Yes, and I have a couple of friends with prostate cancer who sort of educated me a little bit about that discourse, right, that treating prostate cancer is not always the best thing to do and that is indeed often over-treated, and how the ways we describe our cancers and our treatments affect our outcomes, our body, mind and so forth. I've learned a few things. That the idea of declaring war on cancer, which has been part of American medical discourse for 50 years now, since the Nixon administration in the early 70s kind of said we're going to go to war on cancer, that discourse in a way has dictated that we overtreat, because if we're at war with cancer we can't tolerate it anywhere, right, we can't let it sit in our bodies and just kind of let it run its course. We have to kill it, right, and that you sort of kill or be killed mentality is exactly what you're talking about yeah.
Brad Buchanan:
And I think this is a uniquely American view of cancer. So I'd be interested to hear what you from, originally from Europe, whether you've encountered that kind of psychology in Europe first of all and then coming've encountered that kind of psychology in Europe first of all and then coming to the States. Was that more prevalent and did that result in those types of overtreatments?
G van Londen:
This is a very interesting question. I'm originally from the Netherlands but I haven't lived and worked there in over 20 years. But observing the health care of my friends and family members and general observations have led me to conclude that I think medical expertise overall in the Netherlands is very similar to the United States. Maybe perhaps they're slightly delayed, but overall they're very advanced. I think some of the differences the highlights at least, which I'm exaggerating a little bit to drive home the point is that maybe perhaps they do a little less prevention. They might be a little less proactive in the Netherlands. I mean, you have to definitely be an advocate for yourself. Secondly, I think they're applying socialized medicine principles, which is somewhat similar to Canada, where they have a gatekeeper and everybody has access to supposedly the same health care but long waiting times. I think in the United States it's more a service-driven model you get what you pay for. But I think both ends of the spectrum here in the United States as well as there in the Netherlands are somewhat coming to the middle in the Netherlands are somewhat coming to the middle.
G van Londen:
Lastly, I think there is more of a principle of treating the person as a whole in the Netherlands, which has many pros, as you take into consideration all aspects of the patient and not looking at them based on whatever is wrong with them. But paradoxically, I have also observed that if somebody is older, that they may not treat you as fully based on age alone. So they might lean towards undertreatment of elderly and in that aspect I sometimes wish they would not just look at age but also at someone's physiological age and function. So again, these are extreme descriptions to drive home the point. Obviously these are general observations, but those are some of the observations I have made about the difference between the Dutch and the American healthcare system. Neither of them are perfect, but I think if we could take the best of both worlds we would have a pretty great healthcare system. Does this answer your question, brad? I think you had another question.
Brad Buchanan:
Yeah, and also that aggressive treatment basically destroyed the weaker cancer cells and they leave only the more aggressive cancer cells. So that means that the cancer comes back more aggressively the next time after being aggressively treated the first time. So it's a kind of escalating cycle of violence, so to speak. You're so determined to get rid of your cancer, you hit it with the biggest, most aggressive treatment you can, but then only the weaker parts of the cancer are affected and stronger parts take over even more fully and therefore it comes back in a more threatening form later on.
G van Londen:
That's an interesting thought and I think you're playing devil's advocate a little bit because you're sort of alluding, I think, reading between the lines. Do we really need to do cancer treatment if we're only further helping along this process of making some cancer cells more resistant to treatment, which is why we're escalating our cancer therapies to try to outsmart the tumor? I think that is sort of a chicken and egg story that I think we still really don't understand. Overall, cancer treatments have definitely helped our prognosis, as we can see from large scientific studies that show improved survival over the last 50 years, but more improvement remains to be made, in particular fine-tuning and personalizing treatment. Observing is that if we think about the cancer spectrum, how one normal cell starts to mutate into a cancer cell, that starts to multiply and form a mass or a cancerous lesion, and then some of these cancer cells might start to mutate again and lead to clonal selections, which can happen spontaneously, which can happen driven by cancer treatments, and some of these clonal populations might be more aggressive than others and more resistant to treatment. Again, these mutations can develop on their own as well as driven by cancer treatment, if we can kill the tumor cell before it has the chance to develop a mutation. That would be ideal and that is the goal, but sometimes cancer cells do not get killed by cancer treatment, sometimes they get put to sleep, or sometimes cancer cells develop mutations before they get killed so they can survive and withstand the cancer therapy toxic effects.
G van Londen:
And so what I'm trying to say here is that the story is rather complicated. If it was simple we would have figured it out, but it's rather complicated. Some people are saying that there is a conspiracy to hold out on the cancer cure for financial reasons, to turn it into a lucrative business. But the reality is that cancer biology is rather complicated and we have come very far, but we still have far to go to further improve the morbidity and mortality of all the cancer patients globally. But then the question is how do we best treat the patient? And I guess the question is how do we smartly treat the patient when a cancer is not sensitive to cancer treatments anymore? It has the opportunity to continue to grow and therefore overtake our body, to continue to grow and therefore overtake our body, and that leads to our demise.
G van Londen:
The question is if any of these treatment resistant mutation formations are affected positively or negatively or neutrally by the combination of cancer treatments, as well as the order of cancer treatments, as well as whether we are incorporating a drug holiday and many other factors. Obviously, this is a very bird's eye overview of the cancer biology, but I'm hoping that this will help you understand, which brings me to the Warm or Rapid Body Autopsy Program. Several universities in the United States have this program, which allows terminal cancer patients at the end of their life to donate their body within a very short time frame after death. Hence the rapid autopsy program, with the specific purpose to look at the questions we just addressed. What are all these tumors at the different sites of our body doing in terms of mutations? That will help us understand if we need to approach cancer treatments differently, incorporating genomic data, the genetic material that a tumor is comprised of. So it's moving towards a very personalized treatment approach yeah, one.
Brad Buchanan:
one final thought before maybe we move on is that in the literature that I've been reading, people who say that we're over-treating and over-aggressively treating they don't usually advocate for well, let's just not bother treating at all, but let's not hit the patient with the maximum tolerated dose every single time, Right? Because that's how American medicine seems to function most of the time as well. We figure out how much of this toxic treatment can this patient tolerate, and then we give it to them and they survive barely most of the time. Long run, we're actually strengthening the cancer, whereas a lower dose of initial treatment might do a better job of achieving that homeostasis. So it's not. The alternative is not let's just not bother treating the cancer, but rather let's modify the treatment and the aggressiveness of the treatment to suit the situation, right, and so we're both sparing the patient a lot of short-term pain and we're not encouraging the cancer to get more aggressive.
G van Londen:
I really like your way of thinking, because that's where the field of oncology is going now. Less is more. We're learning this. We've been blasting all these patients and they may be cured cured, but highly damaged.
G van Londen:
Cancer treatments can optimize quality of life as a first priority and hopefully also quantity of life, while we pursue the goal of cure in those who are diagnosed with early stage localized cancer and we tend to be more aggressive with our cancer therapies to kill the cancer cells before they have developed mutations that render them resistant to cancer therapies and to eradicate potential circulating tumor cells that may have escaped the primary tumor site before complete local control of a solid tumor has been obtained. When recommending systemic therapy for solid tumors, we often take the potential risk of the presence of these circulating cells into account to reduce the recurrence risk and optimize survival. But this treatment concept mostly applies to solid tumors, in which we often create a personalized package of local therapies that may include surgery and radiation, as well as often a variety of systemic treatments, to optimize outcomes. But yes, there is a lot of research going on right now to see exactly what you're referring to. How do we hit that sweet spot?
G van Londen:
so that we also don't enhance this clonal selection process.
Brad Buchanan:
Yeah, okay, I'm glad I'm up today on my reading anyway.
G van Londen:
Yes, you are Good way of thinking. Thank you, brian. Well, how about we end this part here and then we will post the second part of our discussion about our initial cancer treatment soon? Thank you everybody for listening and stay tuned for our next episode.