Patient expectations and shared decision making in aRCC
Prof Manuela Schmidinger – Medical University of Vienna, Vienna, Austria
Prof Ernst Agneter – Agneter PharmaConsulting GmbH
MS: Hello and welcome to this series of webinars of hot topics in renal cell cancer. My name is Manuela Schmidinger, I’m a Professor of Medicine and I specialise in medical oncology and intensive care medicine. Today I have the great pleasure to discuss a very important topic in kidney cancer and in cancer in general which is the patient voice, what really matters for patients with advanced renal cell cancer. I have the pleasure to be joined by a patient of mine who is a physician as well, Professor Ernst Agneter. Ernst, can I turn this to you for your introduction?
EA: Well thanks for having me. As you mentioned, I’m a physician myself so I specialise in pharmacology. I guess treating a pharmacologist is not the easiest task you could be in. However, as one topic should be what’s really important from the patient’s view and not so much from the physician’s view. The most important thing is to have a treating physician who is really a specialist in the disease you have, so I was very lucky to have you as my physician. The next thing which is also very important is how you deal with your disease and what you think the aim is. So in our case the aim was always to cure me from this disease. When people think of cancer, cure is something which is sometimes out of scope. However, the aim has to be cure so we did everything which was necessary – we did a lot of surgeries, we did a lot of treatment and finally it proved to be successful because, as you know, I am off treatment now for almost seven years. So we reached a 100% cure which is a sensational outcome for a patient who was diagnosed at the stage of a 3cm in diameter metastatic lymph node in the lung. So it was in a stage which was quite advanced and, thanks to you, my surgeries and medications, we finally got the cure. This is, I think, a great success for medicine as such.
MS: Ernst, when you were informed about the diagnosis many years ago, more than a decade ago, what did you actually expect from the course of the disease? What did you expect? Apart from the devastation about this diagnosis, but what was in your mind regarding what is the possible outcome?
EA: Well, actually, with the diagnosis, when I was in medical school life expectation was calculated in months rather than years. So of course you are devastated from this diagnosis and at the same time you don’t have much to lose because your expectation of lifespan is, as I told you, calculated in months. So I think the most important thing is to start… let’s call it fighting for a cure and not to resign and to say, ‘Well, the end is approaching and I will change my life completely whatsoever.’ So what for me was important was to see that a normal life, even with this diagnosis, is more or less feasible. So I returned always to work at the earliest timepoint possible; I still went diving with my kids, I went for holidays. I did everything which I did before. So don’t let this cancer rule you but rule your life as you did it before and this was very, very helpful.
MS: At the timepoint when you were diagnosed, according to the scoring systems that we use in advanced kidney cancer you were classified as IMDC poor risk and today we have, of course, much more attractive medical strategies than we had back then when you were diagnosed with the disease. But I think the most important element in our joint war against this cancer was really to bring you always to the next step of available modern treatment. This is something that you were always up for, you were very brave in always going through hard phases also, just to be sure to survive long enough to see the availability of a next level treatment. And you got all these next level treatments finally and the last one was actually the one that was the game-changer, right?
EA: Yes, that’s what I mentioned or meant when I said you have to have really an expert as a treating physician. Because it’s the top-notch treatment which allows you to have better chances. So leaning back and looking at the textbooks of evidence, it’s good for students but not so good for patients because we have big progress in substances, in treatment, and having all this possibility to get the latest treatments is tremendously – I think I’m the best example – increase your chances to survive and get cured.
MS: You had, of course, multiple side effects over the years that we treated you. You were always very brave in dealing with these side effects. Once you raised an important sentence – we talked about the saying that it’s not the years in your life that count but it’s the life in your years. So please can you remind me of your answer to that.
EA: Especially in cancer treatments, patients feel side effects. So one might think diarrhoea and all this which comes with side effects and treatment. However, I always had this example of people going to parties on a Friday, they drink a lot of alcohol and vomit, also as I did with my treatment, but there was more sense in my one than in this alcohol one. As you mentioned, it’s not about… You can’t do anything against, you have this disease, you haven’t chosen it so you have to make the best out of it. You have to cope with it and you have to live with it and living with it means you have to go back, as I said, to your normal life and enjoy as much as is possible the time you have. It’s getting more important to spend time with friends and families and so on. Also to really engage with your work – I never stopped giving lectures, my students, I never stopped with my consultancy. So going back to normal life is, I think, the best thing you can do.
MS: You once told me it’s fine for you to deal with the side effects because you said from my doctor I expect to give me the years in my life and I will take care myself for the life in my years. Do you remember?
EA: Yes, I always think that we have different roles as the physician and the patient. The patient is responsible for how he is spending his time and the physician is responsible for giving this time to the patient. So that’s also a way to look at the different roles by saying that it’s not the task of the physician to get really involved in how this patient feels and his psychological surroundings; concentrate on the one hand on the medical stuff and concentrate, as a patient, on your life. So I think that’s really to be separated and it’s good if you have a personal understanding and, as we have, in the meantime a close friendship. But we have different roles as physician and patient.
MS: The best thing about the treatment was that I no longer need to treat you now, for seven years meanwhile.
EA: Yes, you have been too successful I guess. Just to mention another thing which I think is really important from the patient perspective. To be in an active role, so if you have side effects you can cope with by eating special food or avoiding special food; do something so that you don’t have the feeling that you’re just in a passive role. So you have to actively work on your process, on your side effects, on your life as well. So it’s something which you can’t 200% give away and have people doing this. Having a bit of control, I think, is good as a patient.
MS: If you needed to give one single advice to a newly diagnosed patient with advanced kidney cancer what would that be?
EA: Look at me, I’m seven years off treatment and I feel quite normal, as I may dare to say. So there is a big chance that you can do that also.
MS: Yes, you really are a role model, I really have to say that. I’m so happy that we made this way.
EA: You can believe me, I’m happy too.
MS: It was a great pleasure talking to you today, Ernst, and I think you have so many important messages to tell, not only to physicians but also to patients. I really feel very glad that I was in the position to be your treating physician, it was an honour for me and I’m so happy that we came out with this result.
EA: Well, I was lucky to have you as a treating physician so thanks for that.
