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When you’re dealing with cancer, your oncology nurse is there for your every step of the way – asking you about your symptoms, administering treatment. Your nurse is answering the most pressing questions that you have right now and ultimately, helping you preserve your dignity at a time when you really need it the most.
Right now, we’re talking to one amazing nurse, her name is Natasha and she’s helped so many folks like you and me to get through treatment in the best way possible. Natasha also does a lot of really amazing work around clinical trials, so we get to find out what that’s really like, so let’s dig in!
Here are some things that we cover today:
- Why self-compassion is critical throughout cancer treatment
- Dealing with uncertainty
- How clinical trials can work for you
- and much, much more!
Australian New Zealand Clinical Trials Registry
Episode 029: What You Must Know About Clinical Trials Before Starting Treatment
Joe: Natasha, it’s so scary to go through treatment, I guess because you don’t really know what’s going on and you don’t really know how things are going to turn out. Is there really any way to prepare for cancer treatment?
Natasha: No, I don’t think there is. Knowledge is important but also listening to your body and getting to know your body and what doesn’t feel right for you and what does feel right for you and gathering that information as much as possible about what’s normal for you and what’s not normal for you. Trying to do that right from the very beginning. I think that’s really important, but just being nice to yourself and looking after yourself as much as possible. You know, I heard someone call it self-compassion, not being hard on yourself and going, “I’ve got to be tough, I’ve got to be strong.”
That’s good to believe that but also, I feel sick because I’m having some really heavy-duty treatment with side-effects and I feel really bad at the moment. Just not being hard on yourself about that. Do you know what I’m saying?
Joe: Yes, absolutely. I think it makes so much sense because you do have a tendency or even to put on a brave face and go, “Yes, I can do this. I’m okay”, when in reality it just wears you out. You have to balance your normal everyday life, you might be working, you might have a family, you might have friends, you might have everything going on. At the same time, you’ve got this treatment that explodes into your life. You have to figure out how everything works and dealing with side-effects. You have to navigate the system. You’ve got oncologists and your medical team and how does it all fit together? Yes, it can be a bit of a maze, right?
Natasha: It can. To be honest with you, I’ve been a nurse for a long time, I don’t want to say how long because it will probably be embarrassing for me. I’m still working it out. The system is always changing. It’s not like there’s this static way that things go and then you go, “Okay, now I know how it works, we’re going to okay for the rest of our lives.” It’s constantly changing.
You’ll come back in six months and you don’t call that person anymore, we’ve reworked thing. Now they’re more efficient and you’ve got to call this person. There’s just constant change. There’s change in your everyday life. There’s change in how your body is responding to treatment. There’s change in what’s going on in the health system. It’s a lot to navigate. You still have to have a job and pay your bills. You know, be with your family. It’s a lot.
Joe: Exactly. What advice do you have on dealing with uncertainty, especially for someone who’s going through treatment?
Natasha: Probably my best advice is to say uncertainty is okay and it’s normal. If you’re feeling uncertain, that’s a normal thing. We just don’t know. We don’t know how you’re going to respond, we don’t know how your cancer is going to respond. We don’t know what’s going to happen, but we’re going to do our best to get the best for you, the whole way through. Right from this moment on, we’re going to do our best.
You need to ask questions and ask for help and just do whatever, reach out to us as much as possible because that’s what we’re there for. I think that would be my advice. That uncertainty is normal and just get whatever help you need. Let that sit with you until you start to get some certainty and some grounding on what’s going on, I guess.
Joe: Yes. Absolutely. That makes so much sense. As an oncology nurse, do people ask you a lot of questions, do patients ask you questions? Is that the right thing to do?
Natasha: Yes. If anything, I go asking them questions, as well. People do ask a lot of questions, there’s no question that’s not an unusual question, I guess. If we don’t know, we know who to ask, or who to get to help. Yes, we like questions.
Joe: That’s good to hear. Obviously, as a patient, you have aches and pains during treatment, how do you know whether it’s cancer or whether it’s the side-effect or whether it’s something that’s totally unrelated?
Natasha: Yes, that is one of those things that just comes with experience. Especially when it’s an unfamiliar ache or pain that you’ve not had before. We all have our aches and pains, especially as we get older, they become more pronounced. There’s the normal aches and pains that we get, you know? Sore knee from walking too many stairs. Some of our treatments can exacerbate those pains, if you’ve got a little bit of arthritis and you have some treatments, that can actually get exacerbated, that’s normal.
I think it’s just that thing that comes with experience. You just have to listen to your body and be kind to your body and that sort of thing. Just get to know yourself, your body is changing. When you have treatment, all the cells in your body are changing and responding and you’ve just got to learn the new ways, I guess. Just constantly speak up. If there’s a pain that’s worrying you, speak up about it, let the doctor assess you, let the nurse assess you, do some blood tests. Have a scan if people think you need to have a scan.
Just do what you think you need to do. If your gut-feeling is telling you something’s not right, then just say, “I’ve got this pain, my gut-feeling is telling me it’s not right.” We will listen to that and we will look into that.
Joe: That’s makes a lot of sense. Natasha, you see a lot of people who go through treatment, is there anything someone can do to really go through treatment just in a better way, to get through it in a better shape, mentally, emotionally, socially? What do you think? What advice do you have on that front?
Natasha: Well, there’s so much research out there about this sort of thing. We’re learning more and more about it. I think it just goes back to basics of exercising regularly, don’t go crazy. Just have a walk. Even when you’re really tired, a walk can just pick up your mood, get out in the sun. Wear your sun hat and your sun screen and that sort of stuff, but just get outside, get some fresh air. Eat a nice healthy breakfast. Do whatever you can. If you’ve got problems with nausea, try to get a plan in place to help manage that. Just try to do whatever you can for having a good quality life. Have friends over, even if you’re feeling rotten, just have people over. Grandkids or neighbours, whatever, have people over. Just be gentle with yourself about it. Yes, I think exercise, good food, good company, I think that’s a pretty good way to live all the time.
Joe: Yes, that’s the way with or without cancer.
Natasha: Yes, that’s right.
Joe: That’s fantastic, Natasha. Look, clinical trials, why are they important?
Natasha: Well, most of us, for myself and the oncologists I work for and Allied Health team members, the reason we do clinical trials is to give our patients access to more treatments and more modes of care that wouldn’t normally be available to them. That’s the main reason we do it. There’ll be some treatments that are new and cutting edge. If we were to wait until they were normally available on the PBS, that’s not a treatment option available here and now for that patient, so that’s why we do clinical trials.
We don’t always know that it’s going to go well, but most of the clinical trials that we get have had many phases before we actually do them. They’re really important as part of our health system because they offer an alternative form of treatment. They also increase knowledge and research. They help us find better treatments for people and just build layers and layers of knowledge. There’s also a lot of research that shows that hospitals that do lots of clinical trials actually have better care and better outcomes, their patients usually do better.
I think it’s because there’s always people analysing and assessing how we look after people and evaluating it. We’re always trying to do things a bit better. We just don’t get stuck into the same old, same old when there are better options out there, if that makes sense? There’s certainly a lot of data that shows, if you’ve got clinical trials happening, even if you’re not on a clinical trial, patients do a lot better in those sorts of institutions.
Joe: That’s so great to hear. I think that’s fascinating because that’s a real incentive for people to really consider going with a clinical trial, but also just going to a hospital that, as you say, does clinical trials. Tell me, as a patient, how is going through a clinical trial different to standard treatment? Just in terms of dealing with it day-to-day?
Natasha: Yes, there is the uncertainty, we don’t actually know if the clinical trial treatments are better than what we already do, because of that uncertainty, we have to do a lot more tests. Keeping a little closer eye on you. We’re trying to save money, that’s an incentive by the health system, trying to fall in what would be normal treatment and say that we’re not doing a lot of extra tests that costs money, but we keep a much closer eye on you which demands a lot more of you usually time-wise, with us probably calling you and asking you how you’re going? We’ll do an extra assessment when you come into see the doctor. There’s just that extra level of time and attention.
There are often extra blood tests involved because we are keeping a very close eye on you. With clinical trials, they’re very heavily regulated. We’ve got very strict protocols because historically, there has been periods, like in the 60s where trials weren’t done properly. Now, we have really strict rules that we have to follow. That means we’re a bit stricter with our patients because of the strict rules that we’re supposed to be following. I think that’s probably the biggest thing, is they’re really structured and yes, they’re not as flexible.
Joe: I think that’s great because you know that there is lots of structure and process around it. It’s not just random things that are happening. You’re not the guinea pig.
Natasha: No, you’re not the guinea pig. There is that idea out there, but, no, I think clinical research has become very sophisticated. Yes, no, by the time they get to us, unfortunately, all of that experimental type stuff has been tested and it’s more about real treatment in large populations of patients.
Joe: Exactly and getting real outcomes for people.
Natasha: That’s right, yes.
Joe: As a patient, how do you know if the treatment is working or not, like when you’re going through a clinical trial?
Natasha: Well, we’ll be keeping a close eye on you with your tests. It depends on how the trial is designed and what the trial is trying to achieve, but the standard is usually they’ll be blood tests with different markers. There’ll be scans, they’ll probably be done a little bit more frequently in the beginning. The biggest way of knowing is if you start to feel better. That’s how you know if the treatment is working. Usually, people start to feel better and that is usually a much earlier marker that treatment is working, then the scan.
Joe: Cool. Tell me about the follow-up you do with people because, like you mentioned earlier, that you follow-up sometimes for quite a few years actually, how does that work?
Natasha: We usually do it for safety, just to make sure there are no lagging effects from treatment that we don’t know about. Initially, we’ll see people more frequently. We might see them 30 days after they finish treatment, sometimes we see them 2 weeks, 30 days. Just very close time periods. It might stretch out to three months and then stretch out to six months, then stretch out to once a year. Then we might just find them once a year and say, “How have you been? Has anything been going on? Have you been seeing your GP?”
Just to make sure there aren’t any unanticipated consequences. If there are, we get on top of it quickly rather than it just not being addressed. A lot of the treatments that are done with a clinical trial are specialised. We need that specialist vigilant attention, just to make sure everything is okay. Yes, you know what, I personally think that’s fantastic, because even with a standard treatment, you’ve got regular follow-up anyway.
Joe: I think that’s great because personally, going to see my oncologist makes me feel great because I’m going, well, just making sure that it’s all on track. It also keeps me focused just on my life, living day-to-day, just being focused on the present and living in the now. What do you think about that?
Natasha: Yes, I think that’s great. That’s a great way of looking at it. It’s like a routine flag of, well, this is where I’m at, at the moment, I think that’s good. It’s the right thing. If you get caught up in all the other stuff and it’s great that there’s that, all right, this is where I’m at, and that’s feeling pretty good.
Joe: Yes, exactly. Thank you. Natasha, do people that you talk to believe that they made the right choice about signing up for a clinical trial?
Natasha: I haven’t really had that discussion with many people. I just think it just becomes part of what’s happened. To be honest with you, I’ve never had any discussions with anyone about what was the right treatment or what wasn’t the right treatment. It’s like everyone’s got their path their taken, this is the result of that path. I don’t know. I can’t think of any time when anyone has said they are glad they did, or they regret it. I might have forgotten.
Joe: I was interested to what you’d say, but now you say that people don’t really have those conversations, it really makes sense to me because when I think back to myself and when I think to some of the treatment choices that I made along the way, I probably don’t meditate on that too much. It’s happened, and I am where I am. You just move on, right?
Natasha: That’s right. We do take the decision-making quite seriously and making sure that people are making their own choices and they’ve got all the information they need to make that choice. We take that really seriously. It’s something that we get trained to do. I guess people because they’re making their own choices, then that is what it is. I think maybe if people were being pressured by others to make a choice they didn’t want to, they maybe regret. There’s quite a structured process with letting people make their own decisions, providing them with the appropriate information.
Even if people do give consent to go in on a clinical trial, that consent is ongoing, so people can change their mind at any time. If they start on a clinical trial, it doesn’t feel right, and they say, “I’m out, I don’t want to do this. I want to change to this.” Then that’s what happens. Maybe people are just making whatever decisions work for them when they need to. I would hope that’s what we do. I’m just guessing, but that’s maybe why I haven’t had anyone say that because we certainly have had people who started on clinical trials and just said, “This isn’t for me. I really want to go to Europe for six weeks. I really don’t want to do this. Can we do something else?” That’s totally fine.
Joe: Cool. I think it’s really special for anyone going through treatment, whether that’s a clinical trial or standard treatment, has a nurse like yourself that they can talk to on a regular basis, whether that’s every day or whether that’s every hour, whatever that may be. To ask questions and to be able to get some comfort and to ask about aches and pains and worries and to get all that addressed. What do you think about that?
Natasha: Yes, I’d hope that’s what we were doing. I’d hope that people thought that we were doing that, because that’s what we try to do. Yes, I hope that we were there as a resource, to hold your hand when you need someone there. To high-five you when things are going great and if you need more information, we’ll find the answers for you, do you know what I mean? It may take us a while, we might need to find out stuff, do more investigations, take your blood pressure, but we’ll find out the answers for you.
Joe: Natasha, I think you’re being unnecessarily modest, you guys, oncology nurses, are saviours and yes, I want to thank you for what you do in the world because it’s so important. We need it. It’s such a huge crucial role for the patient. I know that I’ve had a number of oncology nurses that we with me through treatment, it’s been absolutely incredible because I do think it’s different from nursing in other areas, it’s just such an involved thing in a way.
Natasha: It is very involved. Yes, because I worked in intensive care for a long time, I loved working in intensive care, but it was a different type of nursing, it is about living in the moment. It’s hard to explain. It is a different type of nursing, it’s very rewarding, though.
Joe: What’s different? How is it different?
Natasha: I just think people sometimes say to me, it must be hard working in oncology. I just go, no, I’ve got it pretty easy, actually. It does sound cheesy, but people inspire you every day. There are people that will turn up for treatment having gotten up at four o’clock in the morning to do something. I don’t know, human beings in crisis are incredibly inspiring. To watch them just put their life back into the pieces that works really well for them. I don’t know, it’s just really inspiring. People are really amazing. It’s real or something.
I don’t have the words to describe it. I’m sure there are some very eloquent people out there that have written about it, but it’s just very real. Like you were saying, about when you see the oncologist, it just makes you go, okay, I’m in this moment. I don’t find that I’m daydreaming about other stuff when I’m at work, it’s really about what’s happening here and now, it’s very much like that.
Joe: Yes, that’s fantastic. I really love that because it goes back ways, that it is rewarding, obviously, for you, as well. Again, Natasha, thank you so much for your time and thank you so much for what you do and the difference that you make. I think it’s huge as a nurse, in terms of clinical trials and making sure that your people get access to the best treatment available and ultimately, get the outcomes that they want, which is hopefully a cure, right?
Natasha: Yes, that’s what we try to do. If we’re not doing it, just tell us, you know? Just say, I really need you to do this, this is not working well for me. We really want to do what we can.
Joe: Absolutely. Thanks a lot, Natasha. I really enjoyed it.
Natasha: Thank you. Thanks very much. I really enjoyed it, too.