The Current - Balancing cancer care with quality of life

Episode Date: February 4, 2025

Cancer treatments are designed to extend a person’s life, but can be so debilitating that some patients can’t truly enjoy the time they gain. A new study published in Lancet Oncology is calling for treatments that take quality of life into account, balancing living longer with feeling better.

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Terry McCray was diagnosed with colon cancer in the summer of 2022. After surgery and six rounds of chemo, he thought he was in the clear, but last year he learned that cancer had returned. After my PET scans, I had multiple places the cancer was, so it was not, they were not able to surgically remove what I had. There's multiple places and the only option I had was chemotherapy and I was given at

that time two to three years to live. So that was quite a slap in the face. Terry's 69. He gets chemotherapy every two weeks to delay the spread of that cancer. He wants to live longer, but it's just as important to him to be well enough to enjoy the life he has left. When you're looking at the big picture of things,

uh, you know, the, being able to be there, watching your grandkids grow, being with your kids. And my, my wife and I, we're 46 years married and we do a lot of stuff together and it's pretty scary to think that that could end. But as long as we extend it as long as I can and I'm able to do stuff, that's great. Stuff like spending time with his grandkids at their cottage by the lake just north of Kingston, Ontario, or enjoying a few days of downhill skiing with his son between treatments.

It is a balance between extending life as long as possible and maintaining a decent quality of life. And now a paper published today in the Lancet Oncology Journal is calling for standards in clinical trials that would ensure that new treatments emphasize quality of life. We'll hear more about that study in just a moment, but first I'm joined by Rachel Coven. She is a patient advocate with the cancer program at Kingston Health Sciences Centre. Rachel, good morning to you.

Good morning, Matt. A diagnosis of cancer can be terrifying for many people and immediately they will turn to any number of things. But one is to try to figure out what the treatment is that could help alleviate the things that they're facing. What are you hearing from patients with a diagnosis like Terry's, but what they want most in the face of that news?

I think everyone wants something different. Everyone has an individual experience. And I think what Terri talks about is truly what people are looking for is a balance between the time that they have left and the quality of the time that they have left. It's really two different ideas, I would say. I mentioned you're a patient advocate.

This is also something that you know personally because because you went through this with, with your late husband. Yes, I did. Tell me about his diagnosis and, and, and what followed. My husband was diagnosed with metastatic gastroesophageal cancer in the fall of 2014. We had a young family then. My daughter was nine and my son was six and

it was a catastrophic point in our lives that we never thought we would see. How do you prepare for something like that? You believe that as Terry is doing, you grow old with your spouse and live to see your children meet so many incredible milestones and we just weren't going to have that. And he caught very sick very quickly. So it wasn't anything that we saw coming. What was the approach that he took to his treatment? My late husband found his strength in the idea of treatment at any cost. And so he took any kind of option there was without a lot of regard for perhaps without a lot of regard for perhaps what the consequence

of that would be in terms of the time it would take away from doing the small things with his family. He was entrenched in a fight narrative and that was where he found his hope and his strength. Tell me more about that in terms of the consequences. This is hard to talk about, I know, but the consequence of that and what that meant for your family. And as you mentioned, your kids are still young at the time.

The consequence of that was spending an awful lot of time at the hospital, either having treatment, getting tests before the treatment, attending medical appointments. And in a lot of cases beyond the first line of treatment, the ones that came after that really, I would say, didn't necessarily contribute positively to the quality of the time that he had.

Oftentimes we ran into complications and he was sicker and it really didn't allow us to enjoy the small things in life. And my daughter, now looking back as she's 20 years old, she and I've had that conversation that she wished her dad at a certain point would have just been content to enjoy the time that he had without treatment and spend time with her at home.

I mean, that's in some ways almost an impossible thing to wrap your head around because the instinct for so many people, including your late husband, is to fight like hell. But as you said, there can be a cost or a consequence to that as well. How does that shape what you say to patients and their families who are making these decisions

in the work that you do now as a patient advocate? I think the best approach to take really is to look at the person as someone with cancer and that molecular pathology of their tumor is really secondary and it's really important to get to know the family and what their goals are as a family and to try and help them navigate all the choices that are available, both treatment and non-treatment. Unfortunately, I feel like sometimes with this battle narrative that's perpetuated, people see not having treatment as giving up. And they're really not giving up. Sometimes, really, they're just choosing a path that's a different perspective. They may be

giving up a few days or a few weeks or a few months depending on the treatment, but if the quality of the days and months that you have are better, then perhaps maybe you're really not giving up as much as you think. What are the kind of questions that you think families should be asking doctors as they work through this? There's three groups of questions I would say. First and foremost, it's around the diagnosis and understanding the diagnosis. Is it curable? What stage is the cancer at? And where the cancer is located? Is it in other places? So that's the first group of questions. The next group of questions is around treatment options. And as I said, maybe some of those

options are not having treatment, but understanding the treatment, what the side effects will be. And then thirdly, I would say, how is their decisions going forward going to impact the life they have with their family? And I think that really, for me, is the most important thing. It's understanding who they are as a family, what their goals are, what they'd like to do with the time that they have in a palliative cancer situation, and really helping them to

choose treatments that are aligned with what they would like to do with the time they had left. For those of us who aren't doctors, how easy is it to get that information in a way that we can actually understand what's coming at us? It's not that easy, I would say. I am an epidemiologist by training, So I had that background when my late husband got sick and even I struggled in trying to find research that would support us making a good decision. Science does an excellent job of using the quantitative aspect of time as it relates to medical intervention and treatment, they can look at how long it will take until a tumor progresses or how much additional time you have in survival.

And that's sort of measuring numbers of days. But it does, again, do a great job in looking at the quality of the person's life within those days, so the qualitative aspect of it. There wasn't a lot in the literature, although they can find a statistically significant relationship, it doesn't actually tell you what that means in the real world and how it can make a difference.

Just before I let you go, we're gonna speak in just a moment about this idea of common sense oncology, something that we've talked about before on the program, but based on what you've gone through and what you're talking about, just briefly, what does that phrase mean to you? Common sense oncology? Yeah.

I think it's outcomes that matter to people. That's really what the essence is about. And helping people figure out what those outcomes are by giving them the knowledge to make the best decision they can for their loved one and their family and for themselves. Rachel, I'm glad to talk to you about this. Thank you very much.

Thank you so much for having me. I really appreciate the opportunity. Rachel Colvin is the co-chair of the Patient and Family Advisory Council for the Cancer Program about this. Thank you very much. Thank you so much for having me. I really appreciate the opportunity. Rachel Colvin is the co-chair of the Patient and Family Advisory Council for the Cancer Program at Kingston Health Sciences Centre in Kingston, Ontario. In 2017, it felt like drugs were everywhere in the news, so I started a podcast called On Drugs. We covered a lot of ground over two seasons, but there are still so many more stories to tell. Dr. Ian Tanek is an emeritus professor of medical oncology at Princess Margaret Cancer

Centre and the University of Toronto and a leading author of a paper published in the Lancet Oncology. Today, he is calling for improvements in clinical trials for new cancer treatments. Dr. Tanek is with me in studio. Good morning. Good morning. You're part of a growing number of doctors who

practice this idea of common sense oncology. We've talked about this before from a medical perspective. We spoke with a patient who had decided facing a serious diagnosis that she was going to stop her treatment to live the life that she had and live it as full as possible rather than see that life interrupted by and perhaps derailed by treatments. What does that phrase mean to you? Common sense oncology? rather than see that life interrupted by and perhaps derailed by treatments.

What does that phrase mean to you? Common sense oncology. Well, I think Rachel said it very well. I think it's a grassroots organization which has doctors, patients, nurses, and so on. And I think we've come together because we recognize, as Rachel said so well, that we want to champion treatments

that really help patients. But unfortunately we also have out there a number of treatments that have been approved that don't do a lot for patients. And so we're trying to improve both the way that the evidence is gathered so that we have good evidence for the treatments that really work and not to support the treatments that sometimes do very little for the patients. We're trying to improve education of young oncologists so that they critically look at that.

And we're trying to improve communication. Rachel said it very well that sometimes in communicating with doctors, the patient doesn't get a real view of what will really help them and where treatments might add toxicity without a great deal of benefits. Can you help me understand that? Why is it that people would be getting treatments

that wouldn't help them? I mean, the assumption is that the treatment that you're getting is a treatment that is meant to help you in the situation that you're in. Why is that not happening? Well, there are many complex reasons, but most of the evidence comes from cancer clinical trials. And the gold standard for clinical trials

is where patients receive, by random choice, by the cost of a coin, if you like, either a new treatment or a standard treatment. And then in those trials, accrue many hundreds of patients often participate, there is an analysis at the end. And these trials, which has changed over the last

20 or 30 years, are now run entirely by pharmaceutical companies, almost entirely, 90% of them. Some of those have led to very good drugs. So we really have had some new drugs that have made a huge difference to both the survival and its quality. But unfortunately, there are also a number of drugs

out there that have been put forward by companies, and because of a variety of biases and so on, that the evidence is not very strong, but nonetheless, those drugs or new treatments have often been approved by the registration agencies, the FDA in the US, the EMA in Europe and Health Canada here. These are treatments that would,

reading the paper suggests that these are treatments that perhaps would reduce tumor size but not make the patient feel any better, for example. Yes, that's very true. Quite a few years ago, there was a concentration on really the outcomes that matter. I mean, as Rachel said, there's only two things that we ultimately want to do.

We either want to make the patient live longer for a longer survival, and preferably as well make them live a life that is of higher quality. And there's been a tendency in the clinical trials to use alternative outcome measures. So delay in tumor growth, which is obviously something that patients like to hear, but if that's confounded

by added toxicity, that doesn't really help them. And unfortunately, that particular outcome measure in general doesn't predict very well for either longer survival or for better quality of survival. Are there examples of treatments that you've seen that would have minimal benefits to patients? Absolutely, yes.

Like what? Well, there are several types of drugs that have been approved. Drugs are a variety of different diseases that have led to improvements in delay to progression of their tumor, but have not improved when there is a later analysis of the length of survival that haven't led

to a meaningful improvement of the length of survival that haven't led to a meaningful improvement in the length of survival and haven't led to a meaningful improvement in the quality of life. You want me to name some drugs? Well, no, but I mean, I don't think people would know the drugs, but I'm just curious as to if you could immediately say, yes, that's the case, what's leading to the bias that would allow those drugs

to be available but also to have that treatment kind of directed toward the patient? What's at the the bias that would allow those drugs to be available but also to have that treatment directed toward the patient? What's at the root of that bias? The root of the bias is that the clinical trials that are done, often they are not done very well. The pharmaceutical industry will use whatever methods they can to bring drugs to market. And as I say, they've done some good trials. That's led to some good treatments.

But otherwise, there's a variety of, if you like, dodges that are used that can lead to a false impression of benefit. And some of those dodges are, you always compare a new treatment with the best current standard, that's what you should do. But some trials have used an older standard

that is not the optimal treatment at that time, so that obviously gives a bias towards the new treatment looking better that may not be there. Often, companies will use a treatment that has been shown beneficial in a late stage of the disease and try to move it earlier in the disease and sometimes that's a good thing to do. But sometimes it's not and one of the things that's happened is that trials have become very big, They've become sometimes global. So the people who get this treatment earlier,

all of those will get it. The people who are in the other group that don't get it should be able to get it later if it's been shown to be beneficial. But if you live in a middle income country and many of the trials are recruiting patients in China, Brazil, Russia, Argentina, et cetera, the patients can't afford it.

And the companies should actually be providing that, but they're not. So those are a couple of things. Another is patient dropout. I mean, obviously when you recruit patients into a clinical trial, they have the perfect right to say, I've had enough of this, I don't want any more. And if patients drop out randomly, that isn't a problem.

But in some of the trials, up to 20% of the patients drop out. And one of the things that happens is that new drugs usually, not only they hopefully might bring benefit, but they usually also add toxicity. And so the patients who drop out tend to be those who aren't doing very well. If you're having a new treatment and you're feeling sicker, you say, I've had enough of this, I don't want any more of this.

And if those patients drop out, those are the patients who usually will have poorer outcome measures. So you drop them out of the experimental group, the group that are receiving the new treatment. And that leads to a bias in favor because the ones who are left are those with better outcome measures.

So there are various types of biases that are a little bit hidden, but which can confound the outcomes or the reported outcomes of the clinical trial. What's the better way forward? Again, this matters because the patient and their loved ones want that patient to have those goals. I mean, you want to live longer,

you want to enjoy that time that you have. You want to feel good, you want to feel better. So what's the better way forward here? Well, absolutely you're right. The better way we think is to establish some firm principles for people who are both designing trials, analyzing the trials and reporting the trials. And in the paper that you mentioned at the outset, we have a couple of checklists that are relatively simple lists of a few things that need to be done.

And they address some of the problems that I've just talked about. What we're hoping is that we will obviously give these checklists and alert people who are editors of journals, reviewers of journals, people analyzing trials, clinical trialists, and the companies that are often designing them to try to get them to improve the way they design, analyze, and report the trial. Is this corrupted by money at the center of it? I mean, there's a lot of money that's sloshing around here.

There's huge amounts of it. And corrupted is a strong word, but I mean, if you're trying to get the cleanest, utmost accurate outcome possible. It's definitely, money plays a huge part. When I was a young oncologist several decades ago, most of the trials were supported by government grants, charities, and so on.

And that's changed dramatically over the time. So as I said, 90% or more of the large practice-changing clinical trials are now supported by companies. I'm not saying they don't do some good trials. They've done some very good trials, and we've had some good products of that. But along with that, there are other trials that are not of the same caliber,

and there are testing treatments that aren't of the same caliber, and they're testy treatments that aren't of the same caliber. But the company is beholden to its shareholders. It's trying to make a profit, and sometimes the goals of making a profit and the goals of helping patients to live longer and live better come together. They're cohesive, but sometimes they're not,

and that I think is a fault. So yes, you're right that finances play a big part in it. Just in the last couple of minutes that we have, can I go back to what I started with, which is if you are a patient and this is a diagnosis that you don't want, but you've received this diagnosis, what should you be thinking about?

What should your families be thinking? What should you be asking? Well, I think that's something we're trying to tackle as well. We have a lot of patients involved with our group and we're trying to, one of our colleagues who's a member of the group is coming up with a patient charter and trying to come up with a list of reasonable questions. But some of them with exactly those that were voiced by Rachel just before I started speaking. Is this treatment likely to both, is it likely to prolong my life by a reasonable amount?

Is it a treatment that even if I accept that the drugs may add a little bit of toxicity, is it thereafter going to lead me to have a better life where I can do the things that she so nicely described? Hmm. Those are hard conversations to have. They are hard conversations and it's often easier just to prescribe something but then take the time to have the conversations. But the conversation is very important. Dr. Tanek, thank you very much. It's a pleasure.

Dr. Ian Tanek is Emeritus Professor of Medical Oncology at Princess Margaret Cancer Centre in the University of Toronto. As I mentioned, we've talked about this a couple of times and the response that we've gotten back from people has been really powerful. This idea of common sense oncology and what you are looking for, um, in the wake of a diagnosis and what that path might be for you in, in, in

trying to figure out how to get and achieve those goals. Um, if you have gone through this yourself or with a family member, we'd love to hear from you. You can email us, thecurrentatcbc.ca. For more CBC podcasts, go to cbc.ca slash podcasts.