Good morning, John.

So since being diagnosed with cancer, I've noticed that like people's primary concern is that it kills people, which makes sense. And just like apparently the primary celebrity concern is their net worth, when you type in the name of a cancer, one of the first autocompletes is gonna be survival rate. But cancer survival rates, it turns out, are even more complicated than celebrity net worths. So, I wanted to talk a little bit about it so that maybe we can occupy, like, more of the correct space of uncertainty when it comes to this stuff ‘cause unfortunately there is a lot of that. And also maybe a tiny bit of having a slightly healthier relationship with mortality, which isn't easy.

So yeah, this video is gonna have conversations about death and disease, including my own, so if you're not in the mood for that, that's fine. And I put a link in the video description to a wonderful video about electric car brake lights, which I love.

Now your first thought might be, “This shouldn't be very hard. Just tell me how many people get the disease and how many people die from the disease, and then I'll know how likely it is that the disease is going to kill that person." And you can do this. Uh, you could crunch this number yourself. It's just that it's not that useful, but it is interesting to look at why it's not that useful so let's do it.

In the U.S. every year, about 9,000 people get Hodgkin lymphoma or Hodgkin's lymphoma. The jury's out. It's officially Hodgkin. It used to be called Hodgkin's Disease. Anyway, every year in America, 9,000 people get this disease. About 900 die of it. So there you go. Boom. Your statistic. What do you want more than that. 10% of people who get Hodgkin's are killed by it. But that statistic does not contain a lot of very important information. For example, it could be that a lot of those people have had HL for 30 years before they died. And dying of a disease one year after diagnosis is very different from dying of a disease 30 years after diagnosis. Also, if people are dying 20 or 30 years after diagnosis those people had treatments that are 20 or 30 years old which are much worse than treatments we have today. Also, individuals in that population are very different from each other. Hodgkin's is actually like a bimodal distribution with young people and old people getting it. It's actually pretty weird weird that I got it because I'm in the middle. And people in their 70s or 80s are gonna have a worse prognosis than people in their 20s, if only because they're less interested or able to sort of do a lot of really intensive chemotherapy. And also, people who get Hodgkin's lymphoma are more likely to die of things that aren't Hodgkin's lymphoma. Both because of the cancer and the treatment, people who have had Hodgkin's lymphoma are more likely to die of heart disease, lung disease, other cancers.

So to correct for a bunch of those things and also for a couple other reasons. but still giving you, like, not that much information, overall we tend to use something called the five-year survival rate. It's mostly a thing to sort of help patients understand where they're at really quickly with a very simple statistic and it's obviously not perfect because, like, what about the sixth year? Like I'm not concerned about whether this person makes it five years. Are they gonna be ok!? I just want to know if they're gonna be okay!

There's like three reasons why we use this and they're all pretty good, so I'm okay with us using it.

First, now this isn't true for all cancers but it is true for some, if you make it five years, you're likely to make it six. And five years is an amount of time that is, like, a lot of life, so we're just sort of saying this is the likelihood that this person is going to have a lot of life left.

Second, if you start to look at 10-year or especially like 15, 20, 30-year survival rates, the data start to become entirely useless. Because even with a five-year survival rate, you are only looking at people who got diagnosed at least five years ago. And cancer treatments and prognosis has gotten better in just those five or six or seven or eight years. If you're looking at 10-year survival rates, then those people were diagnosed more than 10 years ago. 15, 20 year survival rates, there's just not-it's not gonna be apples to apples compared to a person who was diagnosed today.

And last, you want a valuable piece of information to get across really quickly in that moment that people will understand clearly. And the percentage of people that are alive in five years is very understandable clear thing that tells people the most important thing that they kinda wanna know right now. But obviously there's some imperfections here, and there are two things that are actually adjusted for and you can adjust for them fairly easily. There's a website that I've found that, like, I don't-when I Googled it I'd never find this, but it's cancersurvivalrates.com, and it just does a good job of, uh, taking in, like, three pieces of information and telling you one, two, three, five, and ten, I think, survival rates. And those pieces of information are the kind of cancer, the stage that it is at, and the age of the person. And those are the main important things. Now diff-some cancers also have like the different kinds of cancer, you can click little boxes.

However even there there's a bunch of information that you're not getting. For example, people who have Hodgkin's lymphoma, who live for five years who are still alive five years later, are very likely to never relapse. They will probably die at a fairly normal age of some other thing. On the other hand, people with chronic lymphocytic leukemia are just as likely to be alive in five years, but are very unlikely to not have that disease anymore. And there's lots of variation here, like some cancers at certain stages you're very likely to be alive at five years, but very unlikely to be alive at ten years. At least with current technology. I don't think that we know this enough, but different cancers are different diseases. They are completely different diseases with different progressions, different prognosis, different treatments. And that makes it so that statistics like these where we're trying to find a piece of information that can sort of be like a consistent definition across a bunch of different cancers just aren't gonna contain as much information as we imagine them to, or as we would like them to.

And so now at this point in the video, we have to make a distinction between, like, the two reasons a person would be watching this video.

One is because someone that you know about or that you know a little bit or a celebrity has cancer, and you want to know what all this means. And for that like you're just not gonna know. There's gonna be so much information that you are not going to have.

And then there are people who are watching because they or someone that they love and that they're going to be part of giving care to is-has cancer and there is gonna be a bunch more information heading your way or you already have it or it's gonna come slower than you'd like, but there will be a bunch of information.

You're gonna know the stage of the cancer which is basically a way of defining, honestly like, almost a different disease. Like cancers at different stages are basically different diseases. They're treated differently, they have much different prognoses. You might also, and this isn't always the case, but you might also know the grade of your cancer which is how aggressive your particular cancer is active. And some staging is just like 1, 2, 3, 4, but some staging is different from that. like HL. There's a thing called bulky disease, where you'd put like a an X next to it, if you have bulky disease. And then also there's like A symptoms and there's B symptoms, and if you have B symptoms in bulky disease then you could be stage 3BX. I have stage 2A, with no X, which is great. But like that's more in the weeds than you're gonna get with your average celebrity cancer announcement. When you start to get into, when you're actually like in it, is that like survival rate is one piece of the prognosis. And there are a lot of other pieces of the prognosis, which include, like, the treatment and how that you're going to respond to the treatment, are you gonna like live through that, the kinds of support you're gonna need.

But, as far as like more more robust pieces of information with regards to survival that you might get, there are two statistics that you might hear about.

There is the rate of disease-free survival. So maybe at five years, what's the disease free survival rate. And that is people who not just are alive, but also don't have any signs of the cancer in their body. Now that doesn't mean they're not gonna relapse, but it is good. Like if you're talking at all about the-the disease-free survival rates, then that's a good sign for your cancer.

There's also something called progression-free survival and that's when the person is both alive and their cancer has stopped progressing, it's no longer spreading more throughout the body. That's something that we're talking about more now that we're treating some cancers, especially in older people, as chronic diseases. Like we're not trying to totally cure them because the treatment would decrease the quality of life of the patient so much, it's not worth it or it could even lead to the possibility of them dying from complications of treatment.

Now you can go deeper into the stats as far as mortality gets. Like you could talk about standardized mortality ratios, which is more of a useful thing in research literature than it is in individual lives, because what it comes down to here is that if there's like a 50% chance that you're not gonna be alive in five years you're on one side or the other of that. Like you're one data point, you're not a population study. Age and stage are not the only risk factors, but they are, like, basically the only ones that we do a very good job of adjusting for in these big like bulk studies.

But you and your people know better, like the actual risk factors that this the-the individual patient has. You know better how likely you are to stick to a really intensive regimen of chemo, which is a very important part of people's prognosis. And you know more about your capacity to advocate for the patient or for yourself in an imperfect healthcare system. These statistics are useful, I just don't think that they contain as much information as we think they do, especially because it tells you, like, one thing or another is going to happen whereas a conversation with an oncologist about a sort of prognosis it's gonna be much more full of detail about what to expect in the future.

I think that it is extremely important to talk to people who have seen a number of folks go through similar journeys. And that the doctor is a good person for that and they should be excellent resources for that. And if you feel like they aren't you should talk to them about that, or you know every doctor should be fine with you looking for a second opinion, and that's often the first step to getting another doctor. I talked to several different oncologists, and one thing I notice is that they are very different from each other. And like, what I vibed with isn't about how bad of a doctor someone is, it's about me. It's about what I need as a patient. And some patients are gonna want that like no-nonsense doctor who talks about it like, 'We're just gonna do this, and this is what we're gonna do and we can do it." And some patients are going to want somebody who sits down with them and looks at them in the eyes and feels their pain with them, and that's just a different vibe. And that's fine to want one or the other of those things.

Now at the end here, I want to share something that I heard from a creator on TikTok who's also going through a cancer diagnosis right now. Her name is Ann Russell, and she said a very smart thing, which is that, "A person who has an 85% chance of dying in the next five years is a 100% percent alive now." Our lives aren't valuable because we have a guarantee that we're going to be here in a certain amount of time. Our lives are valuable because we're here now.

So basically I think these stats are useful, but they are not as useful as we would like them to be for two reasons. First, because they just don't contain as much information as it feels like they do or as we would like them to. And second, because I worry that people might see a stat that says that someone's not gonna be alive in five years, maybe, and then they would just start to treat them as if they had already died, which is very bad and we shouldn't do that. If you are curious a person at my age with my stage of Hodgkin's lymphoma has about a 94% five-year survival rate. And wildly, something like a 90% chance of disease-free survival in five years. These numbers are so high for a bunch of reasons. One, Hodgkin's cells are just not good at repairing themselves and you throw stuff at them and they die, which is great. But also because of many decades of careful and excellent work by lots of researchers working with lots of patients to whom I am-will forever be in debt.

Thank you so much to all the people who have been a part of making today the best time in human history to get cancer. John, I'll see you on Tuesday.