ECC 2015

'Survivor passport' for survivors of childhood leukaemia

Prof Martin Schrappe - University Medical Center Schleswig-Holstein, Kiel, Germany

This is the new strategic plan, we’re talking about, for cancer care for children and adolescents. We’ve been hearing about the possibilities with new drugs but what about survivorship issues? What are the issues you’re facing in this new plan right now?

We have about 80% survivors in all malignancies of childhood together, that means we have now a significant part in the population who survived leukaemia or cancer in childhood. But unfortunately survival is not the same as for other kids and that means they have health problems which we had not anticipated several years ago.

And you also have the effects of treatment, don’t you?

Exactly, it’s both the disease but it’s also the treatment. This morning we heard a very nice presentation summarising the effects, for example, of an agent called anthracyclines. It’s a group of agents which is very effective against cancer but it has significant long-term toxicity.

Cardio-toxicity for example.

Cardio-toxicity, yes.

Second cancers as well?

Not so much with this agent alone. Second cancer is an issue for radiotherapy.

Now, we’re having a plan then, how is that going to help this late toxicity, long-term toxicity, and long-term morbidity?

Together with some other FP7 funded projects the aim is really to inform the survivor, not only to inform the community but also to inform the survivor and give him a tool, for example in the form of an app or some other material, which allows him to present to his or her doctor twenty or thirty years later, ‘Look here, this is the disease I had. This is the stage of disease I had. Here were growing tumours, here are the pictures.’ Just think about it, you would try to figure out an X-ray that you received thirty years ago, this is difficult.

So this could happen, you could put this power into the patients’ hands?

Yes, yes, that’s our goal and this morning, this project presented the passport, we call it survivor passport, to the community and to the public here.

Now apart from that history there are biological issues you’ve been looking into, I understand, too.

Yes, both. For survivors here the big issue is their predisposition – do you have genes that allow you to get cancer easier than other people in the world? The second issue is do we understand the biology of tumours? There are a lot of things coming up, of course, due to the better genetic analysis of tumours and leukaemias.

So what are the take-home messages coming out of your work with the strategic plan for cancer doctors all over the world?

In the future we have to take all of this information together when we want to address cancer in an individual. We have to look out for the means that the tumour is analysed with all the information that is available today and, given the chance that this is a rare abnormality, that we approach it with the right drugs that are available already today.

And the hope for children and young adults and adolescents, how much better can that treatment and long-term care be done if you have a good plan around that?

I really hope that this more precise type of medicine will allow us to avoid some of these late effects.

What should doctors be doing, then, very briefly?

They really should try to send the patients to a specialised centre taking care of kids with cancer.

Thank you very much.

Thank you.