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With cancer comes uncertainty. Often, you don’t really know what’s going on, yet, you have to make decisions over things that you don’t really understand. How do you know what’s happening? How do you know what’s the best option for you when it comes to treatment? Is clinical trial the right way to go? These are just some of the things we’re talking about to David who is a radiation oncologist and who also wrote a fantastic book called “Taking Charge of Cancer”.
Here are some things that we cover today:
- How taking charge of your treatment can improve your chances
- Why understanding medical reports can make a difference
- Simple strategy to get a (free!) second opinion
- How understanding treatment goals can shape your decision making
- and much, much more!
Links
Episode 029: What You Must Know About Clinical Trials Before Starting Treatment
Full Transcript
Joe: David, you say that taking charge of your treatment can really improve your chances. What does it mean to you?
David: Taking charge of your treatment can help to make sure that you are getting the best possible cancer treatment. We know that across the world, there are big differences in quality of cancer treatment. By making sure that you are getting access to your medical records, understanding your medical records. Making sure that you’re getting the best high-volume surgeons or radiation doctors, you can really make sure that nothing is missed and that things are proceeding as they should. Unfortunately, sometimes in the media, we hear stories of cancer treatment gone wrong.
One example of that is, not too far from where I am, there were a couple of breast cancer patients who had mastectomies, they had their breasts removed, only to find out afterwards that they didn’t have cancer at all. That the original biopsy that was done before the mastectomy was done, it didn’t show cancer, but the report was misread by their surgeon. Obviously, that’s very tragic and it’s something that we could avoid if we can start empowering patients to do things to take charge of their cancer, like getting their pathology reports and learning to understand them.
That’s what the book really does, it’s meant to be a guide book on how to take those steps, how to understand these reports that are written in a language that many of us don’t work with on a daily basis.
Joe: Yes, that’s a fantastic point you make, David. What are the sorts of things that as a patient you should watch out for in the report, in the medical report?
David: Well, I think the first thing is to know which medical reports are needed. Really, the important reports are the reports from imaging. If you have a CT scan or if you have an MRI scan, getting the report from that. Also, getting the report from the pathology. The pathology report is something that’s written, if you’ve had a biopsy, or if you’ve had a surgery. When you’ve had a biopsy or a surgery, the specimen that they take is sent to a doctor called the pathologist, who looks at the specimen under a microscope and issues a report.
All of the treatment stems from the pathology report and the imaging for most patients. Along with those two reports, usually when you meet your doctor for the first time, they also write a report, which we call a consultation report. In that consultation report, they will summarise everything that’s going on. It’s a fantastic tool if you can get a copy of that, to understand your type of cancer, the stage that you’re at and what the goals of treatment are. Some hospitals now have a setup where you can login and you can access your reports online.
At other centres, you have to go and get them printed off, which can come at a cost. I find that many people, when they get copies of their reports, they really like having them. What I often do when I see a patient who has had a scan, let’s say they’ve had a CT scan, I will bring their report in with them and I’ll underline the important things and I’ll give them that copy. Then they can know exactly what’s going on.
Joe: Yes, exactly. That’s such a great point, David. That’s something that’s always made me feel uncomfortable. The fact that the person who is deciding my faith at various points of the cancer journey is the pathologist, is the person I never see, and I never talk to, you know, as a patient?
David: Yes. Some situations, it’s pretty uncommon for a pathologist to reach out to the patient directly, but sometimes radiologists do that when someone has a scan. Sometimes the radiologist will come out and talk to them. I think the world has changed medicine has changed. People are much more informed and they’re much more empowered. I’ll give you an example of how these things can change. Shortly after I wrote the book, I went in with one of my patients who’s had a scan of his brain. That scan was looking for cancer. I had read the report and I went into the room and I said to him, the scan was fine, there’s no sign of any cancer in your brain. He said, okay, can I have a copy of the report. I said, okay. I hadn’t printed it yet, so I went back up and printed it and brought it in and I went through with him.
One thing that I had missed, that even though there was no cancer there, the report had said, okay, by the way, we see a small aneurism that needs to be looked into. An aneurism is an issue with a blood vessel, which in some cases can be quite serious. Even though I had tried to provide the best quality of care. I had just been so focused on, is it cancer? Is it not cancer? That I hadn’t read right to the end of the report. I had missed that.
By going over that with him, I was able to take a second look at the repot and I sent him off to have that aneurism taken care of. It can really make a difference to get copies of these reports.
Joe: Yes, that’s fantastic, David. It just makes such a huge difference, as you gave in that example. When you’re sitting down with a patient and maybe you’re talking about your report or your diagnosis, maybe you’re deciding which kind of road to take with treatment, how do you know the advice specialist is really the best one for you and your situation?
David: Yes, that’s a good question. I think the first thing to do is to know what the goals of the care are. Before we even talk about knowing that it’s the right approach for you. It’s to understand what the goal is. Is the goal of treatment being to get rid of the cancer? Meaning, to cure it, or is the goal of treatment just to slow things down, knowing that a cancer is incurable, because unfortunately, of course, some cancers are incurable. What we find is that a lot of times, we’re not doing a good job of informing patients of the goals of treatment.
There was a study in the New England Journal of Medicine a few years ago, where they asked patients who were getting chemotherapy, what is the goal of the chemotherapy. Is it meant to cure your cancer or is it meant to slow things down? About three quarters of the patients who answered that question said that the goal of the chemo was to provide a chance of cure, but when they designed the study, all the patients that they were asking these questions to, were patients that were getting chemotherapy that was not meant to cure their cancer.
They’re all getting chemotherapy to slow things down, not to cure it, but three quarters of them had the opposite impression. I think it’s a failure on the part of our medical system of us as physicians, that we’re not doing a great job of communicating the goals, because once you know the goals, it can help you make a better judgment about how aggressive you want to be. Often when the goal is for cure, then people will be more aggressive. I, myself, if I had cancer, if the goal was for cure, then I would want to go all out because we’re looking at a long-life expectancy if you’re successful.
If the goal of care is to slow things down, maybe buy you a few extra months. Then, in my mind, and in many people’s mind, you start looking a lot more into short-term quality of life and side-effects. I think if you’re really wondering if someone’s recommending the right treatment for you, the best thing is a second opinion. I’ll tell you some ways that you can get second opinions without even seeing a physician. For a lot of cancers, there are many options. Joe, I know that you are well-versed in cancer, so you know the story of prostate cancer, how for some men, you can have active surveillance, you can have surgery, sometimes you can have internal/external radiation.
There are so many different options, right? How do you know which ones are best for you? The best way is to get a second opinion. A great way to get second opinions is something called a tumour board. What a tumour board is, it’s a team huddle, where doctors who treat a certain kind of cancer all get together. They’ll be different kinds of doctors, so at a prostate cancer tumour board, for example, there will be surgeons, they’ll be radiation doctors, they’ll be chemotherapy doctors, who we call medical oncologists. That tumour boards, the whole group discusses a case.
Usually, what happens is, they have a radiologist to look, again, at the imaging, and they have a pathologist to look again at the biopsy. Everything is looked at a second time. The group discussed the treatment options. At many centres, particularly at bigger centres, they will have tumour boards. It’s free of charge to have your case discussed there. In the UK, from what I’m told, it’s required that all patients be discussed at a tumour board. If you’re a patient with a new diagnosis of cancer, you could ask your physician, “Please can you present my case to a tumour board.”
Then the tumour board will discuss your case and they’ll either come back and say, “Yes, we agree with the original recommendation, which was, let’s say it was for surgery, we agree with that. That’s a great recommendation.” Or they’ll say, “You know, we thought of another couple of options that may be reasonable.” Or sometimes if they say hey, “We found something that’s slightly changed, either in the pathology or on the imaging.” That happens in about ten or twenty percent of cases, that when they go to the tumour board, something changes about the diagnosis about what they see on the scans. Sometimes it can have a big impact.
Even if it doesn’t, if the tumour board comes back and says, “Hey, we agree with the recommendation”, then you really have a lot of faith that the recommendation was the right one, because you’ve had this second, or even third and fourth, and fifth opinions because there are a lot of doctors on the tumour board.
Joe: Yes, that’s such a fantastic point, David. Also, because you get perspective from people in different fields. As you said, maybe it’s a surgeon, maybe it’s a medical oncologist, maybe it’s a radiation oncologist who’s there, as well. Maybe it’s another specialist in there, as well, so you really get all of your bases covered.
David: That’s right. I know that you know this very well, Joe, but there are these biases in medicine, in cancer treatment, where doctors tend to recommend the treatments that they give themselves. I, as a radiation doctor, I know that I’m biased to recommend radiation and surgeons tend to recommend surgery. I don’t think it’s anything sinister. I think it’s just that we believe in what we do. What can happen is, a patient is sent to me first, to a radiation doctor. I would give them all the choices, but in some cases we’re a bit blinded to what the other choices might be.
Really getting an opinion from different specialists can really be helpful. It’s one thing I say in my book, is that if a surgeon is recommending surgery, you should ask them, is radiation an option for me? If it is, can I meet with a radiation doctor and vice versa. If you’re meeting a radiation doctor and they say, radiation is recommended, then what about surgery? Is that an option? Can I talk to a surgeon? Sometimes they’ll say, that’s not an option because of this and this and this, or they might say, “Yes, that’s a great idea.” Then it just gives you a sense of confidence that you are getting the best treatment.
Joe: Yes, exactly. You know, it’s such an empowering thing to do, as well. When I was deciding on my treatment, my medicinal oncologist sent me on to have a conversation with a radiation oncologist to see if it was the right option. Initially, it was kind of scary because I thought, well, aren’t you supposed to tell me what to do? Then I realised that it’s such an empowering thing, of really looking at your options, talking to different specialists, then you make the decision about what’s going on in your treatment. Sometimes with cancer treatment, you lose control of how things are. Being in a position where you are the one makes a decision is a really good place to be in.
David: Absolutely. We are in a world now where patients want to make decisions, as I think they should. I think 30 years ago, medicine was very paternalistic, and you were told, “Hey, this is what the recommendation is going to be, and this is what you need to do.” Patients were just expected to nod and listen. I think people, in all walks of life, in all areas of society, people are much stronger advocates, which I think is very important.
Joe: Yes, absolutely. Also, David, from personal experience and from speaking to lots of people who went through cancer, I know that often the worst time for a patient is when you’re waiting for results from a scan or a test. It’s just really nerve-racking. How do they take charge of that situation and what do you do there?
David: That is a difficult situation, Joe. The two most anxiety-provoking times are the times before treatment when you have a diagnosis of cancer, but you don’t know how it’s going to be treated, you don’t know how the treatment is going to go. I find that’s a very anxious time. The time right before a scan result, even in the days leading up to the scan, people will tend to start to lose sleep. Then the scan is done and then you have a few days until you have it reported. There really is no way to speed that up.
In some scenarios, like I said, if you have access to your chart, you can login and read the scan report, even before your appointment, the other way is really just making the most of that time, because let’s say you have the scan on Monday and the report is not going to be available for a few days and you meet your oncologist the next day, that time can’t be shortened. I try to tell people to practice their mindfulness techniques, where they ground themselves and say, “Okay, the scan is just going to tell me what’s already going on, it’s better for me to know than not to know.
Then come what may, we will do our best.” Just because I’m having a scan doesn’t mean that we’re going to find something, because most of the time, I would say on average, a scan that is done in follow-up doesn’t show anything. That might be a bit of anxiety that can never be fully eliminated. Even I know people who have been out from treatment coming up to five years and the chances of being cured are already in the high 90 percent for some of these cancers. Even then, the anxiety is there. I don’t think we’ll ever fully get rid of it. It’s more about trying to manage that.
Joe: Yes, absolutely. Look, David, when you’re about to start treatment again, it’s also scary because you really don’t know what to expect. How do you deal with that? What advice do you have on that front?
David: Yes, so I would say there are two things to keep in mind. Often, people feel extremely rushed to get into treatment. Sometimes there are delays and situations where things need to be really rushed, but for most patients, there is time to collect information and to make a decision that’s best for you. The example of a man with an early-stage prostate cancer, there is certainly time to make a decision because for many men, even just doing surveillance is an option. There’s really not a rush. Some cancers present with more extreme life-threatening situations where something has to be done quickly.
A lot of times, there is the opportunity to sit and think and get the information and get your chart and make a good decision for yourself. The other thing that can often be quite helpful during that time is speaking with somebody who has been through it. Many cancer centres have programs where you can meet with some survivors who have been through the situation. You may have some friends or family who have been through it. Also, there’s an organisation, there are some organisations online that will connect you with somebody.
I’m not actually sure what’s available in Australia specifically, but there are, in Canada and the U.S., one is called the Cancer Hope Network and they will connect you with a survivor of your type of cancer. If you have a lung cancer and you’re going through chemo and radiation, they’ll connect you with someone who’s been through there, through that to tell you what it’s going to be all about. That I find can be quite helpful because then you can see what is on the horizon for you, hopefully.
Joe: Yes, no, David, it can make such a huge difference, that’s really great advice. Really, in that case, you’re talking to someone who has been in your shoes, who potentially went through the treatment you’re about to go through right now and had to make similar sorts of decisions, had to deal with side-effects. It’s really the best place to be when you’re combining the expertise of your medical specialist and your medical team with real-world experience of someone who’s been down that road before.
David: Right, exactly. Just knowing someone who’s been there can be very helpful.
Joe: Absolutely, David. I know we’ve touched on this before, but how do you really find the right surgeon or the right hospital to do the operation, if that’s the route you’re going down?
David: Yes, that’s a great question. I think people have had the feeling in the past that medicine is a one-stop shop. You go in, you meet a surgeon, or you meet a radiation doctor, and you go for it and you get what you get and you’re going to have good care. We know that there is actually a lot of variation. It’s not like craft dinner, where you can go to… I don’t know if they even sell craft dinner in Australia, but you go to the grocery store and you buy your pre-packaged dinner. Whether you buy it in ones tore or another, or one country or another, it’s pretty much going to be the same product. This is a lot different.
It’s more if you think about going to the same musician, where some might be fantastic, and some might not be quite so good. There are a lot of tricks towards finding somebody who is quite good. I go through some of these in my book, but one of the things that I think is very easy to ask about is whether you are seeing a high-volume doctor, and whether the cancer hospital you’re going to is a high-volume centre. What I mean by that, being a high-volume centre, is a centre that treats your kind of cancer a lot.
Or a surgeon that does your type of operation a lot. We know that across a whole bunch of different cancer surgeries, surgeons who do it a lot and hospitals that do it a lot get much better outcomes. It’s just the idea of practice makes perfect. It’s an example of this, in the U.S. for example, if you are having your oesophagus taken out, which is your swallowing tube, your oesophagus for oesophagus cancer. If you go to a high-volume surgeon, someone who’s doing it a lot, your chances of dying from that surgery, the chances of dying from that surgery are about eight percent, which is actually a fairly high risk.
It’s a significant risk. We take that risk because that’s the way to cure the cancer. In some patients who go through that surgery, they will be cured and live out the rest of their lives. If you were to go to a low-volume surgeon, someone who’s not doing it very often, the risk of dying from the surgery is not eight percent, it’s about twenty-two percent. The numbers go up dramatically just because of the expertise at the centre. I think the one question you can ask your surgeon is, are you considered a high-volume surgeon for this kind of cancer?
If you don’t read the book and don’t read more about it and they say no, you can say, well is this a surgery where you think a high-volume surgeon would be important? It seems to make a big different for the more complicated surgeries. The more complicated the surgery, the riskier it is, the more that having a high-volume surgeon would really help. It’s certainly a question you can ask very easily.
Joe: Yes, absolutely. It’s such a staggering difference that it can make to your survival. It’s really great that you can point out the difference that it can make and the things to look out for. David, what’s your take on clinical trials? How do you know if a clinical trial is the right option for you?
David: Yes, clinical trials are incredibly important. As part of my research, I run clinical trials, I can actually give you an example of a big impact that we’ve had with a clinical trial. Basically, clinical trials are where all the new cutting-edge treatments are tested before they’re brought into mainstream. A clinical trial is sort of like an experiment, it’s not that people are being treated like a guinea pig, that’s not the way it is at all. What’s happening is, doctors think that they might have an improvement on treatment. The clinical trial might be a way for you to get a treatment that doctors think will be better but haven’t yet proven it.
Sometimes you go on a clinical trial and you get a drug or a treatment that proves to be much better, so you’ve benefitted from going on the trial because you’ve got that new drug. The other benefit of going on a trial is that you get I think much better care. The reason why I think you get much better care is two things, one is that usually you have a trial coordinator who’s in touch with you or a trial nurse who’s in touch with you. It serves as your point of contact. When you have an issue with your care at all, your contact is this primary nurse or this trial coordinator.
It’s this inside track to getting help if you need it anywhere along the way. A trial also gives a protocol for the doctors who are treating you. For example, if I have a patient who goes on a clinical trial and I am treating their lung cancer and I’m designing their radiation, I will go through the protocol because they’ll be very specific instructions on how to design the radiation. I think that’s helpful for physicians because it’s just another double-check to make sure that all the checks are being done properly.
If you’re lucky, you’ll go on a trial where the new treatment is quite beneficial. We’ve seen that, for example, with the new advent of immunotherapy in the past five years, which has really changed the treatment of a lot of different cancers. We didn’t know that it was going to change the treatment five years ago, it was only available on trials. Some of the patients who went on these trials, they got this immunotherapy, we didn’t know if it was going to help, but many of those patients were helped. You can see them in the news, these people who went on the first trials of immunotherapy for melanoma, for example, they had an incurable melanoma.
Then five years later, they’re still doing well because they got the immunotherapy. These won’t all be blockbusters, but sometimes they are. Even in the radiation world, we just presented a study this year, where we looked at using radiation to target metastasis. Metastasis means that the cancer has spread. We use the radiation to try to kill some sports of cancer that have spread, which normally you wouldn’t do. What we found was that, I’ll just take a step back, we asked people, “Hey, do you want to go on this study?
If you go on this study, some of you are going to get this experimental radiation and some of you are not. We don’t know for sure if it’s going to help.” Fast-forward now, what we found was that we pretty much doubled the number of people who are alive five years later by doing this radiation that was considered experimental. Sometimes by going on a trial, you can really get access to a treatment that doctors think might be better.
Joe: That’s fantastic. Tell me, what happens when you’re a patient and you’re deciding between the standard treatment and the clinical trial? How do you make that decision?
David: Yes, that’s a really good question. Often, there are a couple of different situations. Once situation is that there is standard treatment and then clinical trials are completely different. They could be a completely different approach. In that case, you really have to weigh the pros and cons. Are you a person who wants to go with something that’s tried and true? Or to take your chances on something that might be a bit more helpful, but that might come with a cost of a bit more time involved for you for being on the study. Or maybe some side-effects that we don’t anticipate.
You have to look into yourself to see how that resonates with you. Also, the other benefit of going on a trial, of course, is that it will help teach your patients. Other trials, when you enter it, there are a couple of different treatments you might get, where you are assigned to a treatment at random. A computer flips a coin and let’s say you either get the standard treatment or the experimental treatment. You don’t choose, the doctor doesn’t choose. Sometimes patients can feel, well, I want to choose, I don’t want a computer to choose for me. What I say to patients is, rest assured, that the doctors are only trying this treatment in a clinical trial if they have good reason to believe that it’s going to be helpful. Doing a trial for a physician costs years or decades of work and work that you don’t often get paid for doing a trial.
It’s just work that you’re doing because you really think that it’s going to help and it’s endless hours of paperwork and that sort of thing. Doctors always go for trials that they really believe something is going to help. I think that can eb reassuring that even if you can’t choose your treatment by going on a trial, the doctors who are designing the treatment in the trial really do think it’s going to help. They don’t know that for sure, but they really do think that it’s going to help.
Joe: Yes, you make such a fantastic point, David. This was actually one of the things that I love about oncology and just about everyone I’ve been through, my personal experience but also, of course, through my podcast and people are so passionate about getting the best outcomes possible for people. Yes, like you say, a lot of people are doing clinical trials precisely because they want to get the best result possible.
David: Yes, we want to do the best because our patients, many of them are also our friends or they’re family members or they’re us. We really want to move things forward. We’re never going to be happy with the status quo, no matter how much we move the bar, we’re always going to want to do better. It’s interesting because people often ask me, why do I do cancer research? Cancer research sometimes, you can spend your whole career doing cancer research and not really make a huge chance. Sometimes experiments go well, something they don’t. Sometimes trials go well, sometimes they don’t show a benefit.
What many of us think is that what we’re doing here is we’re stepping up to the plate. We have our baseball bat, I know that cricket is probably bigger in Australia than it is baseball, but I’ll stick with the analogy, nonetheless, but it’s the same one. You’re stepping to the plate and you have your bat, the ball is coming at you. You’re going to swing, and that’s you research. Sometimes you’ll swing, and you’ll have a hit and you’ll have a homerun, sometimes you will strike out. At least what reassures many of us is that if we go to swing, if enough of us go to swing, we will have some hits.
We see some of the hits are small and proven. Some of the hits like the immunotherapy are big improvements. In the end, even going up and taking that swing is worth is because although it costs this extra time and it’s extra work, it really does, on the whole, make a difference for cancer patients.
Joe: Yes, that’s perfect, David. Yes, that analogy totally checks out. David, I love your book. Tell me, how did it come about?
David: Mostly, I do research. I never thought that I would write a book for patients, but life takes you on these turns. You never exactly know how things are going to go. I guess, Joe, if I asked you decades ago, if you were going to be running this podcast about getting good cancer treatment, you’d probably would say, “No, I would never envision that.” The way that my life went was that, my best friend, my best friend Bob, he was diagnosed with colon cancer. That was five years ago. Bob and I at the time were in our mid-30s. Bob was a teacher.
When he was diagnosed, he had a best friend who was an oncologist, so I helped him make sure that he got the best treatment and he saw the best surgeons and that everything was looked after. He got copies of his reports and he got copies of his scans. We went through them all. What Bob said to me at the time was that, “This was something that anybody could learn to do. Not everybody has an oncologist as a close friend.” Even he, who is not in the medical profession, he’s a teacher, so he’s well-educated, but he didn’t have a medical background, he was able to do this kind of stuff.
What we realised was that people really needed a step-by-step book on how to do this. There are lots of books about cancer, there are thousands and thousands of books about cancer. As far as we know, this is the only one that talks about getting good-quality treatment. Fast-forward a few years, there was actually a mistake made in his care where things weren’t done as they should. Basically, what happened is that he was lost to follow-up. Meaning, he was supposed to have been followed for a period of time and he wasn’t. That unfortunately lead to a bad outcome.
We’ve lost Bob now, Bob has passed away. In his last few years, he and I put this book together. I would write a chapter and he would read it and say, “Dave, this is understandable, I understand this. Dave, this needs to be reworked.” It really is a legacy for him, this book that will hopefully help other patients.
Joe: Wow, I’m sorry to hear about your friend, David.
David: Yes, well, thank you, Joe, I appreciate that.
Joe: That’s such a really noble goal and it actually reads to me as a conversation, as a conversation you’d have with someone.
David: Yes, that’s how it came about. What I decided when I was writing the book, people are selling everything online. You can go online and buy whatever you want. People are selling IV vitamin C and almond seeds or apricot seeds, which we know don’t do anything. People are making money off of it. I didn’t want this to be seen as that. Even though this is a commercially available book, all the royalties, instead of coming to me, they actually go directly to a cancer research charity in the city that I live in, which is called London.
None of the royalties comes to me. That allows me to advocate for the book as much as possible. Nobody will ever question as to whether there are financial motives, because obviously it’s all been done for charity. I think that’s helped to convince people that my motives are good and I’m just doing this to try to help cancer patients.
Joe: Yes, that’s fantastic, David, good on you. Thank you for what you do in the world.
David: Yes, thank you. Thanks for the call, Joe, it’s really been enjoyable chatting today.
Joe: Thank you so much, David. Tell me, what’s the best way to find your book online?
David: Yes, so it’s available on Amazon, that’s probably the easiest. I don’t know all the Australian book stores. We also have a website that goes with it. The website is called: qualitycancertreatment.com. That has many resources that are quite helpful. It has some patient videos about how to decipher reports, how to keep track of your tests, how to keep track of your department, how to understand your radiation plan, how to find clinical trials. Those videos are freely available, so people can find that on the website. Again, which is, qualitycancertreatment.com.
Joe: Fantastic. Thank you, David.
David: Thanks very much.