Episode 037: Making Better Decisions About Treatment and Life Beyond
Oct 03, 2018•43 min•Transcript available on Metacast Episode description
Look, I know there are just a million things you need to worry about when you’re dealing with cancer - you have to plan around treatment, worry about side-effects, and keep your family and friends in check... It’s tough, but there are also many solutions out there to make life easier - and that’s what we’re talking about today with Haryana. Haryana takes her incredible medical expertise and she’s transposing it over the real world, to find better ways of dealing with cancer, from the time that you’re diagnosed to the life after treatment. Here are some things we cover today:
Why patient voice needs to be an integral part of clinical practice
The criticality of clinical trials and what they can do for you
Making decisions over treatment
Best tips to prepare for your specialist appointment
and much, much more!
Links
Dr Haryana Dhillon - The University of Sydney
Cancer Council 13 11 20
Question prompt lists for people with cancer - Cancer Institute NSW
Episode 007: How To Use Your Inner Resources To Better Deal With Cancer with Suzanne Chambers
Full Transcript
Joe: There’s so much great advice here. I’m sure you’re going to love it. Yes, Haryana, I’ve noticed on Twitter that you went to the ANZUP Pedalthon, what was that experience like?
Haryana: It was great. I went last year but I didn’t ride. This was the first time I had been riding because I’ve had now two grants from the below the belt Pedalthon, so I went last year and was just a part of a panel discussion. This year was great because we got out early and did the ride, I had all of the teammates that I had, so we were on the ANZUP dream team. We had all been funded by the below the belt money. It was just really nice to be part of that. It was a great feeling because there were more than 250 riders. I’m not the fastest rider, so it was pretty impressive when the lead pack went fast. They were very speedy, and it was tight all the way through. Until the very end. It was good. Great fun to be a part of it.
Joe: Yes, that’s fantastic. What a great turnout, as well.
Haryana: Yes. It was. Good fundraising and I think part of it, I think it was just really nice, we did another panel discussion at the end over lunch, it was just really nice to be able to demonstrate what we do with the funding and how we use it. We had two people who were looking, one person who was looking at bio markets for new ways of delivering treatments for prostate cancer. Someone else who was ways of trying to identify how people are responding early on.
Of course, the project that I was doing about the patient experience and the patient reported outcome measures, so trying to incorporate those into clinical practice, so we could pick up earlier what their symptoms are. Being able to explain to people that’s what we do, and the trials groups is not just about new treatments, but it’s about the whole experience and just trying to help people to be able to live longer, but also live with less symptoms and with a better quality of life, as well.
Joe: Yes, that’s fantastic. Haryana, tell me about the project that you’re going to be working on, about the symptoms, what’s that all about?
Haryana: There’s been a lot of interest over the last few, well, quite a long time, actually, about trying to incorporate quality of life measures and patient reported outcomes into clinical practice. It’s been a bit challenging to do that because the measures that we used to need to be scored and then it’s not really quite clear how you might best deliver that information back to the clinicians to make it easy for them, to incorporate that.
A few years ago, there was a principle study where a team in the U.S. had done this, they actually demonstrated by incorporating patient reported outcomes into routine practice, they increased the survival of the patients in the study,
