by Berta Jereb
is still riding and has been rather successful. We could read an interview with him in a newspaper, after one of his several victories. He says: «Each victory is something fantastic, wherever you compete, on whatever level. Yes, this makes it all worthwhile.« He paid a visit to us just after his first place at an international competition in Hungary. What was on his mind, when he went there? »Hey, I went there to win!«
Again, a year later, we read in the »Daily«: Sandi Smolnikar is the best. He won with two horses, the most difficult category L and was second in category A2. Among 130 competitors from 24 different clubs he was pronounced the best.
Sandi is now over 30, is gradually letting up, still rides for pleasure but is active as a teacher and trainer. He holds a good job, is happy with it, is married with two kids and together they have also built a home. Yet, all is not as simple as it may look at first glance. Sandi was at the Institute a few days ago and also visited me. Among other things we talked about our group sessions, which he ignored since they would only remind him of the unpleasant past that he would like to forget completely. I told him that, as far as we know, these things cannot be forgotten. If you do not unload the burden in conversation with those who had similar experience, something remains deep down. He admitted that here, with me, he can talk freely about his disease and likes it. With other people, he would rather say that he fell and injured the knee or something like that. Then he says something that gives me pause and makes me think that his wound is not completely healed: «The other day a horse kicked me where my scar is and scared the hell out of me. I have been kicked much worse, in other places, have fallen from horses, but have never been nearly as scared as now, when I was kicked right there«
WHEN DOES THE TROUBLE END, DOES IT REALLY GO ON THE WHOLE LIFE?
The quality of life.
Survival curves do not show the whole truth about treatment success. The price of success, paid by the patient, has to be considered. The quality of the survivor's life is a reflection of that price. Our duty all of us who treat children with cancer is not only to cure them, but also to ensure their psycho-social survival. Otherwise we are poor servants to the patients and to society as a whole.
In comparing the results of different treatments in randomized clinical studies the National Cancer Institute in Bethesda, USA, introduced, in 1990, also an evaluation of the quality of life. Studies of this area in different parts of the world focused on how to define and measure this quality. A number of methods and questionnaires exist to-day and quality of life is an established feature in evaluating treatment results. Both survival and quality of life are the main indicators of treatment success.
What, then, is quality of life? How to define it?
For those, who have survived cancer, it has usually been defined as »well being«, which should, as a rule, include physical, psychological, social and spiritual aspects, which, of course are often intertwined.
Mojca was treated for leukemia in1974, when she was 3, she was on chemotherapy for 3 years and received radiation treatment to her head and the whole spine. Her first visit at the Institute of Oncology was in 1986, when she was 16. She arrived with her mother and was a pretty girl with blond locks, rounded cheeks, smiling, but shy. The mother provided most af the answers. Both mother and daughter were freightened, Mojca, as it turned out, has never been told what she was treated for. There were no remarkable findings, the psychologist only found slight emotional instability. Yet it seemed that Mojca (or maybe her mother) was not quite satisfied with this first visit with us. She returned to the pediatric clinic for continued follow-up. She even sought advice there when she got pregnant four years later. She eventually returned to us after repeated invitations; married now, mother of two, she continued her follow-up with us. As she was so shy at her first visit, I asked her, how did she manage to find a husband. «Well, on my own homeground, love came at once and we got married. «She seems happy, they both have jobs and are doing well, the boys are healthy and handsome. She also gave us a photo of the family. And so it continued for several years, she regularly attended, with her husband, the meetings and charities of our Little Knights Foundation, helped with our work there and seemed happy.
Then, two years later, trouble arrived. Even before that, Mojca has lost her job. Now she feels ever more tired, sleepy, but also nervous, irritable, especially with her children. Has headaches on and off, medication does not help. She wants to work, we promise to help her find something. However, when the opportunity is there, her problems increase so that she does not feel capable to work, even if she would like to. We examine her, imaging procedures and several specialists do not find any abnormality in her nervous system, all tests come back »normal«. To the psychologist, whom she knows from before, she arrives accompanied by her husband. Her complaint is pain along the spine and burning sensation in both arms. She is dropping things from her hands. Is on medication for the last 6 months, but it does not help. The psychologist was not able to establish a good contact with her: «Mojca finds it difficult to establish an emotional relationship«. He thinks that she is rather communicating through her pains and problems, which she describes freely and copiously. She is not, however, prepared to talk about herself: « My life is otherwise in good order«. The psychologist also thinks that his examination points to more serious emotional problems, feelings of inadequacy, fear, retreat into isolation, with consequent depression. »Mojca tends to be both capricious and rather dependent at the same time. Her intellectual potential, though above average, cannot be realized adequatly. She refuses psychotherapy«.
Mojca is now 32, she was cured of leukemia 26 years ago. Her disease was treated more aggressively at that time than it would be to-day, especially as far as radiation to the head and the spine is concerned. Her neurological problems, even if not registered by the most modern technology, are most probably due to this treatment. We have been observing similar problems in other patients, similarly treated. These phenomena are not yet explored and we do not know what the future may bring. It seems the least likely that the induced neurological changes and therefore the clinical problems, will fade and disappear in time. Mojca will have to come to terms with her difficulties, which will not be easy for her, capricious and emotionally unstable as she is. We hope that her intellectual capacity will be of help, as should be her family. She and her husband are regular guests at our meetings, trips and charities and it looks like being in this company is of help, that her peers understand. We, the physicians, shall also help as much as possible with our rather limited knowledge in this area.
On her last visit the neurologist wrote: «Initial, barely perceptive deafness, chronic pain syndrome, functional pain. Condition after heavy specific oncological treatment in childhood with all the consequences of malignant disease and anxiety-depressive syndrom. «He recommended a half-time job. We shall see, how this works out.
We have to admit that there is a lot we don´t know about the late effects of childhood cancer treatment. Therefore we maintain that all these former patients have to be followed-up for life so that we both learn from them and help them with their problems, with which they cannot always cope on their own. You will, I think, agree with me that evaluating the quality of Mojca´s life is not an easy task. Are her problems all due to her previous therapy, are they magnified because she was only a baby when treated, what is the source of her emotional disturbance, how does the quality of her life compare to that of an average Slovenian woman her age? More questions than answers.
Physical well-being.
Well-being might be defined as: no trace of disease, no problems, normal functions, independence.
What has remained within the memory of an adolescent of the physical feeling at the time of treatment? From the first visit we start browsing in the former patient´s memory. Specific questions follow when he trusts us with his story: what was his most unpleasant experience and what was most painful? Those, treated decades ago, mostly answered: hospitalization. Those, treated duri
ng later decades, mostly answered: chemotherapy, especially those, who had received lumbar punctures. With careful psychological testing of about 250 former patients we could conclude that repeated hospitalizations left behind more emotional distress than, for instance, radiation or surgery as such.
We found physical consequences of the disease and its treatment in more than half (60%) of the former patients. These were more frequent and more severe in those treated before 1980. The most frequent finding (63%) is diminished function of endocrine glands i.e. the thyroid, ovaries and testes. These hormones we can effectively substitute and, as a rule, the only problems remaining are infertility and the need for regular hormone substitution.
In 17% we judged the consequences of the disease and its treatment as »severe«. Some former patients are invalids after e.g. amputation of a limb. Those, who were treated for brain tumors are most often (41%) severely afflicted. Diminished intellectual capacity, partial lameness and epilepsy. This latter can be managed with medication and regular control. We also know 3 former patients with retarded growth after irradiation of the head and