Long term survival with testicular cancer
Sophie Bunskoek – University Medical Center Gronigen, The Netherlands
Long-term survivorship among cancer patients is what we all want to see, but of course this brings with it some difficulties. You’re working in testicular cancer, can you tell me what you’ve been doing?
As a nurse practitioner I’m involved in checking our testicular patients in long-term toxicity after treatment with chemotherapy. We see them every two years and we give them a big check-up with especially attention for cardio-vascular disease but also for the psychosocial issues cancer survivors will face in their years after treatment.
So there are toxicities and cardiotoxicity is one of them, for instance, but the psychological effect of treatment is quite a different area. What sorts of things have you been unearthing?
Sometimes it’s very basic things like they have trouble with insurances and they want to start a business for themselves and they won’t be able to get their company insured. But you also face patients that are very anxious, very afraid of recurrent disease, and with testicular cancer the chance of being cured for most stages is very high but you can see they still face a lot of fear and have trouble sleeping or get depression, sexual problems and some men face infertility after treatment which can cause, of course, a lot of trouble. Sometimes they have trouble in relationships.
And to overcome some of these challenges you’ve launched a new app, tell me about this.
The app we’re going to launch from our hospital is a tool, an instrument, for follow-up as well as the regular follow-up, as the long-term side effects follow-up. It’s an instrument we want to use for some of the check-ups to be done by their primary physician so they don’t have to come to the hospital all the time. It’s a way they can get the extra information they can use to reach us with questions and it has links to patient information. They’re sort of captain on the ship and they can be in charge of when their check-ups are and what day and what time.
So it’s like a control console for how you’re looking after yourself? What do you get, in fact?
It has all sorts of levels, you can see what the follow-up plan is, you can see what your treatment was, what chemotherapy you got and how many milligrams and when you should come for a check, when your laboratory tests should be done, when the next CT scan should be scheduled. So that’s like an agenda, you can manage it and you can say I want to come next week instead of in two weeks because then I’d like to go on holiday. Besides that you can have your patient information, general information, it has links, but from the app you can email us or phone us, it has all sorts of things.
Measuring psychological difficulties is quite hard so how much evidence have you got that your app might indeed be useful?
The app is not really for psychological problems, it’s more of a tool, an instrument, for patients to be in management of their follow-ups. So for these psychological problems there is some evidence, and especially in testicular cancer patients, that they face it and it’s still present a few years after.
What sorts of answers to these problems can you suggest? The more successful you are, it seems the more difficulties you may run into in the long-term.
It’s very important first of all to find it because if you only do check-ups by physicians and they have ten minutes to see you as a patient to make sure there’s no recurrent disease and there’s no other physical problems, you’re quite quickly out of the room. What I find, that being a nurse, taking the time, because I have thirty minutes for this check-up, and talking about it, asking about it – “Do you sleep? Do you ever… are you reminded of the treatment period often? Are you feeling anxiety?” And then they’re even talking about it and I think the first step to facing these problems or solving the problem is to find them and talk about it and if you never do… Testicular cancer patients are young men, usually, and they’re not really used to talking about problems they face, they just go to their football and to work and to the pub.
So, if you were to distil from the knowledge that you’ve gained one or two important ideas, what would they be that everybody could take note of?
I think it’s good nurses are involved in the follow-up of patients, especially these groups that are highly curable but have a long life ahead of them. Nurses are very good in finding these problems and helping patients solving them.
And to manage your survivorship you suggest the app?
Yes, I think it’s an excellent way to do that, especially for these young men.
And how can people get it?
I think it must be in the App Store today or tomorrow.
Thank you very much indeed.