Ann Kristin Kreft had cancer as a teenager and Heribert Jürgens treated her. But she was no ordinary patient and preferred to get a motorcycle license rather than undergo surgery. The renowned doctor learned from the case how to deal with young cancer patients.
FOCUS online: Ms. Kreft, how did you realize that something was wrong with your body?
Ann Kristin Kreft: As a teenager, I always wanted to be a prima ballerina, so I trained in ballet almost every day. But at some point I started having back pain and a doctor initially assumed it was a herniated disc. After further examinations, it turned out that I have a tumor in my pelvis.
That may sound strange, but at first it was a relief to me that it wasn’t a herniated disc. As a young person, I thought that cancer was only an old people’s disease. That’s why I approached the matter very optimistically when I came to see Heribert at the university clinic.
What was it like for you when you realized the significance of the diagnosis?
Kreft: At the beginning I was looked after by another doctor alongside Heribert who wanted to make it clear to me that I could forget about ballet dancing. I should be happy if I can still walk at all. Of course that was bad for me. Heribert, on the other hand, was always very diplomatic, and that helped.
Heribert Jürgens: How to explain the diagnosis is a particularly important topic for children. If possible, you should never send the child outside the door and talk to the parents alone. It is terrible for the child when he or she stands outside and has to worry about what is being discussed inside.
Kreft: I wouldn’t even have let myself sit at the door. But it really was like that, I was allowed to be present at all the conversations. I had the feeling that Heribert spoke to me on an equal level and that I wasn’t just a number who had to let everything happen to him. I think this is extremely important for the psyche.
Jürgens: You have to involve the child from day one and there is nothing that you can’t talk to him about. Explaining the illness and the reason for treatment is important to gain the child’s trust. There needs to be a partnership between doctor and patient, not from above. But that was often not a given at the time.
The USA, where I worked for a while, did things completely differently. For example, 50 years ago it was already the rule that parents were allowed to sleep with their child in the hospital, while this was far from firmly established in Germany. It is crucial for the children to have a place in the clinic where they can feel at home.
Why did this realization arrive so late in Germany?
Jürgens: Fortunately, only around 2,000 children in Germany develop cancer every year. But this also means that a pediatrician rarely comes into contact with such cases in his professional life. When I started my career, there was virtually no chance of survival for the children because there were no treatment options and there was also a lack of combined expertise. Only over time and with a lot of investment in the future – also with the help of the German Cancer Aid – has the situation in Germany slowly improved and become an international leader and example. The support measures of the German Cancer Aid also played a decisive role in this.
How did the partnership between the two of you work after the diagnosis?
Kreft: First we had to decide how to proceed. My tumor was almost the size of a liter bottle of water. Chemotherapy alone would not have been enough to get rid of it. It was explained to me that it could be irradiated or operated on. With surgery, the chances of recovery are approximately 20 percent higher.
So you decided to go for it?
Jürgens: The orthopedic surgeon explained to Ann Kristin that she could be paralyzed after the operation. Of course, we doctors strive to give all patients the best possible chance of recovery. After surgery and complete removal, the risk of recurrence is slightly lower than after radiation. But Ann Kristin had a specific body image in mind and defined herself primarily through unrestricted movement, such as dancing and her love of ballet.
It wasn’t so easy for us at the beginning, but we learned that we have to take a common path. One patient focuses on safety, the other patient says he doesn’t want to live the way he would live after the operation with the potential consequences. That’s why some patients accept lower chances of survival.
Kreft: I simply had a more concrete image in my head of paraplegia than of cancer, so I didn’t want that. And the 30 percent chance of survival that I was given was enough for me. I always had in my head that I could do it anyway, so I didn’t need another 20 percent more chances.
How did your parents take it?
Kreft: Of course it wasn’t easy for them because I had my own mind. But I made a different compromise for it. Because the radiation would have destroyed my ovaries. Heribert then had an idea of how to save her. I didn’t want to do that at first; instead of having children, I would have simply gotten dogs later. As a 15-year-old, that wasn’t a big issue for me. But at least I let my parents persuade me.
Jürgens: We consulted with the reproductive medicine specialists for a long time and then came to the solution that the ovaries could be moved to the side next to the ribs. Maintaining fertility was not yet a given back then. It was not viewed uncritically that the preservation of fertility should be addressed with children and young people. But we already had an excellent and highly professional partner in reproductive medicine at our clinic for such issues.
And we have discovered another positive side effect if we take care of preserving fertility. We have often heard from the children and young people affected: “You actually seem to believe that I can get well again if you take care of something like this.”
Kreft: For me it was certainly worth it in the long term. I had two children, even though the chances of that weren’t particularly great.
You repeatedly asserted your own ideas during the treatment. What do you particularly remember?
Kreft: I took advantage of the advantages that you have in this situation. For example, I went out partying and came to the club when I was under 18 because I thought I only looked so young because of the hair that had fallen out due to the chemo. My parents had to put up with a lot.
Towards the end of the radiation treatment I also got a motorcycle license. I think everyone thought I was completely crazy. But with the argument that you could die soon, I was able to get a lot of things. And I ended the chemo early after eleven out of twelve blocks because I felt like I was healthy.
Aren’t these things completely incomprehensible from a doctor’s perspective?
Jürgens: I admire the energy that Ann Kristin brought up. And that’s important too. If you have to keep a long leash for this, that’s okay.
But doesn’t it bother you when someone makes decisions that obviously reduce the chances of recovery?
Jürgens: You have to accept that patients go their own way. And it is often impossible to say exactly whether it takes eleven or twelve blocks of chemo to get healthy.
But there are also cases where things look different. Around the same time as Ann Kristin, a child was brought in whose parents then claimed that she just needed vitamins and that chemo would be bodily harm. I was also publicly attacked for this. But there are clear rules in the highest court jurisprudence that parental care is of course a very valuable asset, but it also has its limits. A child with a life-threatening illness must not be denied “predominant” chances of recovery. This is usually defined as a chance of recovery of over 50 percent.
But that is not comparable to Ann Kristin’s decisions. She made her own decisions, but at no point did she completely withdraw from therapy.
What have you learned from each other during this time?
Jürgens: That was an intense relationship. Over time, this partnership has become a matter of course when dealing with patients. Every patient and every story gives you a lot back.
Kreft: But it doesn’t always work out as well as it did for me. This takes a lot of strength, especially in a children’s cancer ward. That really impresses me, to be able to handle it so well.
The shared story of Ann Kristin Kreft and Heribert Jürgens is also part of the book “In the Center of Man. 50 Years of German Cancer Aid”, written by the historian and author Dr. Heike Specht.